TABLE OF CONTENTS Welcome to the UAB Comprehensive Cancer Center. .1 RESOURCES – TAB FIVE...... 79 About the UAB Comprehensive Cancer Center/ Patient Navigation ...... 80. About UAB Medicine...... 2 Social Work ...... 81. Legal: Practical Suggestions ...... 81. . DIRECTORY - TAB ONE ...... 3 Financial Issues: Practical Suggestions ...... 85. . Directory of Cancer Care Locations...... 4 Educational Programs for Patients, Families and Caregivers . . 88 Campus Maps & Directions...... 8 Courage Companions – One-on-One Phone Support . . 88 Directory of Services ...... 9 UAB Pastoral Services ...... 89. Support Groups...... 90 MY TREATMENT PLAN - TAB TWO...... 15 The Kirklin Clinic Patient Resource Library: About Your Care Team ...... 16 Finding Reliable Information ...... 94. Getting the Most Out of Your Doctor Visits...... 18 Reading List ...... 97 Medical History ...... 20 Hotel Accommodations ...... 98 Calendar ...... 21 Temporary Housing Options ...... 100 Appointment Log ...... 23 Area Restaurants, Banks ...... 102 Laboratory Results ...... 24 Wigs and Head Care ...... 103 Medication Log ...... 25 Prosthesis ...... 104 Symptom Management ...... 26 Treatment Plan ...... 27 SURVIVORSHIP – TAB SIX...... 105 Frequently Asked Questions ...... 28 Survivorship Stories...... 106 What Lies Ahead...... 113 UNDERSTANDING CANCER - TAB THREE . . 29 How to Coordinate Your Care...... 113. What You Need To Know About Cancer ...... 30 How to Give Back/Get Involved with the Cancer Community .118 Clinical Trials ...... 45 Cancer and Fertility ...... 47 GLOSSARY – TAB SEVEN ...... 120 Definitions of Cancer Terms...... 120 TAKING CARE OF YOURSELF - TAB FOUR 50

Common Side Effects ...... 51 Nutrition for Cancer Patients ...... 60 The Emotional Impact of a Cancer Diagnosis . . 61 Coping with Your Emotions ...... 63 Anxiety, Fear and Depression ...... 65 Panic Attacks ...... 69 Helping a Loved One Cope ...... 70 Talking to Your Children About Cancer ...... 72 Cancer, Sex and Sexuality ...... 75 Supportive Care for You and Your Family ...... 77 WELCOME TO THE UAB COMPREHENSIVE CANCER CENTER. We are honored and proud that you have chosen us to help you through your cancer experience, and it is our commitment that you will receive the most compassionate care and cutting-edge treatment available.

Here at the UAB Comprehensive Cancer Center, we believe in treating the entire patient – both physically and emotionally. That belief led us to developing the very Patient Guide that you now hold in your hands. In this book, you will find a detailed overview of the cancer services provided at UAB. This includes not only treatment information, but also information about our clinical trials and our education and supportive services available to patients.

The UAB Comprehensive Cancer Center is internationally recognized for our compassionate clinical care and strong scientific research programs, and we are the only National Cancer Institute-designated “comprehensive” cancer center in Alabama, as well as the Deep South. As such, it is our mission to eliminate cancer as a major public health problem, and our physicians and scientists are working every day to make that a reality.

We hope you find this Patient Guide helpful, and we thank you for trusting us to guide you through your cancer journey.

Edward Partridge, M.D. Director, UAB Comprehensive Cancer Center and Evalina B. Spencer Chair in Oncology

1 ABOUT UAB MEDICINE AND THE UAB COMPREHENSIVE CANCER CENTER The University of Alabama at Birmingham (UAB) Health System is an academic health center located in Bir- mingham, Alabama. At UAB, we pride ourselves on be- ing the premier medical facility in the state and region, with healthcare professionals who are second to none. As one of U.S. News &World Report’s Best Hospitals, UAB is a national leader in patient care, research and training. Medical facilities all over the country look to UAB to be a leader in medicine, and we deliver with state-of-the-art facilities, doctors at the top of their field of expertise and nurses and medical staff who go above and beyond for our patients every day.

CANCER CARE AT UAB The UAB Comprehensive Cancer Center is an integral part of one of the top institutions in the country. UAB brings world-class care close to home for Alabama families. U.S.News & World Report and other national publications consistently rank UAB’s innovative programs and expert specialists among the best in America. For patients, that means they can trust UAB for the most advanced, most promising treatments—including some that are unavailable anywhere else.

The UAB Comprehensive Cancer Center is the only National Cancer Institute (NCI)-designated comprehensive cancer center located in a six-state area that includes Alabama, Mississippi, Louisiana, Arkansas, South Carolina, and Georgia. UAB’s cancer services are routinely recognized as being among the nation’s best.

UAB’s Comprehensive Cancer Center has an international reputation for leading-edge discoveries, expert treatment, and compassionate care. As one of only 40 (NCI)-designated Comprehensive Cancer Centers in the nation, we have received the highest level of recognition for the work we do from the federal government’s principal agency for cancer research and training.

Our Cancer Center is home to an outstanding faculty of more than 330 physicians and researchers, many of whom are internationally and nationally recognized for their expertise in oncology. The center treats an estimated 5,000 new patients each year. Patients who come to the UAB Comprehensive Cancer Center have the benefit of receiving compassionate, leading-edge care from our team of dedicated experts who are leaders in their fields. At UAB, in addition to our world-renowned physicians, we have nurses, supportive care leaders, patient navigators and social workers who want to help you live your life to the fullest and will support you through your journey.

No matter what type of cancer a patient has, the Cancer Center emphasizes a multidisciplinary approach to treatment. Through our Integrated Multidisciplinary Cancer Care Program (IMCCP), we eliminate the stress brought on by multiple visits to multiple specialists by organizing specialists from several fields (radiation oncologist, medical oncologist, surgical oncologist, pathologist and other therapists) into one team. Our teams of physicians allow the patient to see all of the specialists in one day and devise a treatment plan specifically tailored to that individual.

ABOUT UAB MEDICINE AND THE UAB COMPREHENSIVE CANCER CENTER2 patient guide TAB ONE DIRECTORY

Directory of Cancer Care Locations Directory of Services Campus Maps & Directions

3 DIRECTORY The UAB Comprehensive Cancer Center team is dedicated to providing you the support and compassionate care you need, while helping you obtain the highest quality of life possible, throughout your cancer journey.

Directory of Cancer Care Locations The UAB Comprehensive Cancer Center – Administrative Office North Pavilion 2nd Floor 1802 6th Avenue South Birmingham, AL 35294 205-934-0282

The Kirklin Clinic 2000 6th Avenue South Birmingham, AL 35249 205-801-8000

Cancer Care Services Available Patients with cancer are treated in cancer care centers located within The Kirklin Clinic and throughout the UAB campus. Please see your Clinical Care Coordinator for directions and information for your cancer care treatment location. • The Breast Health Center • Lynne Cohen Ovarian/Breast Risk Assessment Clinic • GI Clinic • Head and Neck Clinic • Hematology/Oncology Clinic • Interdisciplinary Infusion • Mesothelioma Clinic • Neuro-oncology Clinic • Skin Cancer • The Prostate Health Clinic • The Pulmonary, Allergy and Critical Care Medicine Clinic • The Urology Clinic

Convenient Parking Available

The Kirklin Clinic Parking Deck Located at the corner of 6th Avenue South and Richard Arrington, Jr. Boulevard (21st Street), the parking deck is connected to the second floor of The Kirklin Clinic by a weatherproof sky bridge.

Notes: Parking fee applies; remember to bring parking ticket to the clinic to be validated for a discounted rate. This discount is only available for The Kirklin Clinic Parking Deck. High-top van access is restricted to the first floor of the clinic parking deck. Patients arriving in high-top vans or requiring wheelchair assistance should be dropped off at the front door of the clinic before parking the vehicle. On-site valet parking is available on Level 2 of The Kirklin Clinic Parking Deck. Wheelchairs and additional assistance are also available for patients with limitations.

TAB ONE | DIRECTORY OF CANCER CARE LOCATIONS 4 patient guide The Kirklin Clinic at Acton Road 2145 Bonner Way, Suite 200 Birmingham, AL 35243 Phone: 205-978-0250

Cancer Care Services Available • Radiation treatment • Infusion therapy • Onsite lab

Convenient Parking Available

• Parking lot is adjacent to the clinic.

UAB Highlands 1201 11th Avenue South Birmingham, AL 35205 Phone: 205-930-7000

Cancer Care Services Available

• Gamma Knife – 1st Floor

Convenient Parking Available • Free convenient parking is available in the front and adjacent to the UAB Highlands Building • On-site Valet Parking - Located at main entrance of the building

UAB University Hospital 1802 6th Avenue South Birmingham, AL 35294 Phone: 205-934-4011

Cancer Care Services Available Patients with cancer are treated in cancer care centers located within The Kirklin Clinic and throughout the UAB campus. Please see your Clinical Care Coordinator for directions and information for your cancer care treatment location.

Convenient Parking Available

4th Avenue Deck Located on 4th Avenue South between 18th & 19th Streets, the parking deck is connected to the second floor of University Hospital by a weatherproof sky bridge.

Notes: Parking fee applies. The deck features walk-up payment machines and parking Ambassadors dedicated to assisting the public. Those parking in the 4th Avenue Deck must take the ticket they received when they parked in the deck with them, since it will be used later to pay deck charges upon exiting. Persons who require wheelchair assistance may inform staff stationed on the second floor in the Sky Lobby.

TAB ONE | DIRECTORY OF CANCER CARE LOCATIONS 5 patient guide Other parking available in:

University Boulevard Deck (Deck 3) Located on University Boulevard between 19th and 20th Streets. Parking fee applies.

The 6th Avenue Deck (Deck 4) Located on 6th Avenue South between 19th and 20th Streets. Parking fee applies.

On-site Valet Parking Located on the 2nd Level of the 4th Ave Deck.

Women and Infant’s Center 1700 6th Avenue South Birmingham, AL 35249 Phone: 205-934-4011

Cancer Care Services Available Patients with gynecologic cancers are treated within The Women and Infant’s Center. Please see your Clinical Care Coordinator for directions and information for your cancer care clinic location.

Convenient Parking Available

4th Avenue Deck Located on 4th Avenue South between 18th & 19th Streets, the parking deck is connected to the second floor of University Hospital by a weatherproof sky bridge

Note: Parking fee applies. The deck features walk-up payment machines and parking Ambassadors dedicated to assisting the public. Those parking in the 4th Avenue Deck must take the ticket they received when they parked in the deck with them, since it will be used later to pay deck charges upon exiting. Persons who require wheelchair assistance may inform staff stationed on the second floor in the Sky Lobby.

Other parking available in:

University Boulevard Deck (Deck 3) Located on University Boulevard between 19th and 20th Streets. Parking fee applies.

The 6th Avenue Deck (Deck 4) Located on 6th Avenue South between 19th and 20th Streets. Parking fee applies.

On-site Valet Parking Available on 6th Avenue South between 17th and 18th Streets.

Hazelrig-Salter Radiation Oncology Center 1700 6th Avenue South Birmingham, AL 35249 205-934-5671

TAB ONE | DIRECTORY OF CANCER CARE LOCATIONS 6 patient guide Cancer Care Services Available Located in front of the Hazelrig-Salter Radiation Oncology Center, patients and their families are encouraged to visit and enjoy The Jim Limbaugh Family Park of Hope Honoring Phyllis Limbaugh, which provides a green and relaxing space for visitors.

Convenient Parking Available On-site Valet Parking: Located on 6th Avenue South between 17th and 18th Streets (Provided free of charge to ALL Radiation Oncology patients).

UAB Division of Pediatric Hematology-Oncology at Children’s of Alabama 1600 7th Ave. South Birmingham, AL 35233 205-638-9285 or 205/939.9285 205-638-9285 www.childrensAL.org/committedtoacure

Cancer Care Services Available: Infusion therapy Radiation therapy Onsite lab

Convenient Parking Available Covered parking is available at Children’s of Alabama in the parking deck located across the street from the McWane building. The entrance to this deck is on 5th Avenue South. Please remember to take the ticket received when parking to the clinic so it can be validated for discount.

Directory of Services Appointments UAB HealthFinder – 205-934-9999 The Kirklin Clinic – 205-801-8000

Automated Teller Machines (ATMS) 1st Floor West Pavilion Compass 2nd Floor West Pavilion Legacy Federal Credit Union 2nd Floor Jefferson Tower Cafeteria Wachovia 2nd Floor North Pavilion Food Court Compass

*Billing – see Tab 4 You may receive Health System bills from University Hospital (for inpatient and outpatient Hospital services, including infusion therapy) and/or from University of Alabama Health Services Foundation/The Kirklin Clinic (for physician and clinic services). If you have questions about these bills, please call the numbers below, as applicable:

Bills from UAB University Hospital Inpatient Financial Services - 205-934-6400 Automated phone line will direct you toward customer service Dial 1 for Billing Outpatient Financial Services – 205-731-9050 Automated phone line will direct you toward customer service An automated system will ask you for an account number or social security number.

TAB ONE | DIRECTORY OF CANCER CARE LOCATIONS 7 patient guide UAB Hospital Buildings and Concourse Walkways UABUAB Medical Medical CenterCenter District District Legend to District Map P Parking V Valet Parking Patient Entrances

UAB Hospital Long Term Children’s Parking of Alabama Parking Only Legend to Concourse Map ? Information / Guest Services P Parking Food

V Valet Parking Elevators Escalators

Children’s of Alabama Benjamin Russell Hospital

Reserved Parking Only 6th Ave

Children’s of Alabama

Legend to District Map P Parking V Valet Parking Patient Entrances

From I-65, One Way 4th Avenue South

Interior Concourse Hospital Parking Legend to Concourse Map ? Information / Guest Services P Parking Food

P V Valet Parking Elevators Escalators The facilities shown here are all accessible to Marriott Concourse A Concourse B Concourse C Concourse D one another by an interior concourse system Courtyard and covered crosswalks, which are located on ? the second fl oor of each building. 5th Avenue South

Women Hazelrig- y & Infants Salter UAB North Wa The Street Street Center Radiation Hospital Street ® Kirklin th th Pavilion th The Kirklin Clinic Oncology One Clinic® 20 18 19 P Center ? ? V Parking ? V Admitting Street)

Wallace General st P

Jim Limbaugh Tumor Services Family Park Institute Building of Hope

6th Avenue South

Medical Education Center Civitan

Research Russell Building

Spain Tower North Wing North

Rehabilitation Quarterback

Center for Center West Pavilion

Psychiatric Medicine Psychiatric ? Jefferson Tower Richard Arrington, Jr. Richard Arrington, (21 Boulevard Jr. Sparks Hillman Wing South Buildings

Center Boshell Spain Wallace Building Diabetes Building

7th Avenue South 8 Bills from University of Alabama Health Services Foundation/The Kirklin Clinic Financial Services – 1-800-333-6543, x19050 Automated system will ask for an account number or social security number. For a representative, please dial “0.” *Please call a Social Services or Patient Navigation representative for help through this process.

Blood Donor Services American Red Cross Hours of Operation – 10:00 a.m.– 4:00 p.m. North Pavilion 2nd Floor Phone: 205-996-7377

Bone Marrow Transplant Program Pre-Transplant 205-934-1911 Post-Transplant 205-975-2236

Breast Health Center – 205-801-8266 Located at The Kirklin Clinic

Clinical Studies Unit – see Tab 3 Call 205-934-0309 for information or visit www.uab.edu/cancer for available clinical trials.

Coping – see Tab 4 UAB Palliative Care Unit – 205-975-8190 Supportive Care and Survivorship Clinic - 205-801-8624 Pastoral Care – 205-934-4254

Donations – see Tab 6 The UAB Comprehensive Cancer Center Office of Development and Community Relations 1530 3rd Avenue South NP 2505 Birmingham, AL 35294-3300 205-934-0282

Education and Supportive Services – see Tab 5 The UAB Comprehensive Cancer Center Office of Development and Community Relations 205-934-5772

Emergency - Call 911 Emergency Room entrance is located on 18th Street between 5th and 6th Avenues South.

Fertility and Cancer – see Tab 3 UAB Division of Reproductive Endocrinology and Infertility Women & Infants Center 205-996-3130 Additional Information or Appointment: 205-801-7623 or 1-800-282-1847

TAB ONE | DIRECTORY OF SERVICES 9 patient guide Financial Assistance – see Tab 4 Office of Financial Counseling Services – 205-801-9910 (Charity Care) Automated phone service offers five options: Press 1 – Information on a physician’s bill Press 2 – Information on UAB Hospital bill Press 3 – Itemized bill or for insurance verification purposes Press 4 – Financial Assistance Application Press 5 – Financial Counselor

FOOD UAB Hospital Cafeteria – Jefferson Tower, 2nd Floor Hours or Operation Breakfast 6:00 am – 9:45 am Lunch 11:00 am – 2:00 pm Dinner 5:00 pm – 7:30 pm Late Dinner 9:00 pm – 1am

Gourmet Cookies – Jefferson Tower, 2nd Floor Hours of Operation Monday – Friday 6:00am – 5:30pm

GG’s Express Coffee & Food Cart – West Pavilion 1st Floor Hours of Operation - Monday-Friday 6:00 a.m. – 3:00 p.m.

Starbucks - North Pavilion Hours of Operation Mon – Fri – 5:00am – 12:00am Sat – Sun – 6:00am to 8:00pm

UAB Food Court – North Pavilion Hours of Operation Mon – Fri – 6:00am – 9:00pm Sat – Sun – 6:00am – 3:00pm

UAB Hospital Spain Rehab Center Cafeteria - Spain Rehab 1st Floor Hours of Operation: Monday-Friday Breakfast: 8:00 a.m. – 9:00 a.m. Lunch: 11:00 a.m. – 1:30 p.m.

UAB Hospital North Pavilion Food Court – North Pavilion 2nd Floor Hours of Operation Monday - Friday 6:00 a.m. - 8:00 p.m. Saturday 7:00 a.m. -7 :00 p.m. Sundays Closed Food Options: Subway Connie’s Pronto Market Place Country Chicken and Grill Southern Tsunami Sushi

TAB ONE | DIRECTORY OF SERVICES 10 patient guide UAB Highlands – 3rd Floor Hours of Operation Breakfast 6:00am – 9:00am Lunch 11:00am – 2:00pm

Foreign Assistance - see “Guest Services” Translation/Interpreters – *55

Genetics Counseling, Risk Assessment - see physician for additional information UAB Department of Genetics Phone: 205-934-9411

The Lynne Cohen Preventative Care Program for Women’s Cancers The UAB Breast and Ovarian Cancer Prevention and Risk Assessment Clinic is dedicated to breast cancer prevention through genetic assessment, counseling, preventative interventions and clinical trials. A team of experts will give you recommendations on how to reduce your risk for breast cancer. This clinic is the only one of its kind in the Southeast.

Breast Cancer: 205-801-8266 Ovarian Cancer: 205-934-5778 or toll-free 866-494-5778 Location: The Kirklin Clinic

GIFT SHOPS UAB Gift Shop – West Pavilion 1st Floor Hours of Operation: 9:00 a.m. – 4:00 p.m. Phone: 205-934-6434

UAB Hospital Gift Shop – North Pavilion 2nd Floor: Hours of Operation: 9:00 a.m. – 6:00 p.m. Phone: 205-996-2022

Guest Services: Central source of all UAB and Birmingham area information Inside the Hospital: Dial *55 Inside The Kirklin Clinic: 205-801-8623 Off-campus/Outside the Hospital/TKC: 205-934-4322

Guest Services can help you get connected to the following services: • Disabilities Services • Environmental Services • Escort • Food and Nutrition • Home care and Durable Medical Equipment • Interpreters • Language Assistance • Maintenance • Notary Public • Patient Representatives

TAB ONE | DIRECTORY OF SERVICES 11 patient guide Home Care and Durable Medical Equipment – see Guest Services

Hospice – see Social Services

Information, Education – see Tab 5 Comprehensive Cancer Center: 205-934-5772 The Kirklin Clinic Patient Resource Library: 205-502-9956 American Cancer Society : 1-800-ACS-2345 National Cancer Institute Cancer Information Service: 1-800-422-6237 All information available online at www.cancer.gov

Internet - free wireless internet with code: uabhs_public

Lodging – see Tab 5

Medical Equipment – see Social Services

Medical Problems (Non-Emergency) – call your physician After hours or on the weekend call: UAB Connect at 205-934-3411 If an Emergency, call 911

*Medical Records Inpatient – 205-934-4929 Outpatient (The Kirklin Clinic) – Call your physician’s office *Signed patient information release form REQUIRED and fee applies

Medications and Prescriptions The Kirklin Clinic Pharmacy – 205-801-8730 For over-the-counter medications: UAB Hospital Gift Shop - West Pavilion 1st Floor Phone: 205-934-6434 UAB Hospital Gift Shop - North Pavilion 2nd Floor Phone: 205-996-2022 Off-campus pharmacies in proximity – see Tab 4

Parking & Transportation Services Call 205-934-3513 Other Services: MARS (Motorist Assistance Road Service): 205-975-6277

TAB ONE | DIRECTORY OF SERVICES 12 patient guide Parking Decks 4th Avenue Deck - Located on 4th Avenue South between 18th & 19th Streets, the parking deck is connected to the second floor of University Hospital by a weatherproof sky bridge (parking fee applies). University Boulevard Deck - Located on University Boulevard between 19th and 20th Streets (parking fee applies). The 6th Avenue Deck - Located on 6th Avenue South between 19th and 20th Streets (parking fee applies). The Kirklin Clinic Parking Deck - Located at the corner of 6th Avenue South and Richard Arrington, Jr. Boulevard (21st Street), the parking deck is connected to the second floor of The Kirklin Clinic by a weatherproof sky bridge (parking fee applies). *Specific facility parking information is listed under Cancer Care Centers. Patient Navigation – see Tab 5 Patient Navigators facilitate the navigation of the health care system for cancer patients. UAB Comprehensive Cancer Center Patient Navigation: 1-866-843-8277 American Cancer Society (ACS) Patient Navigator: 205-502-9958

Patient Pick-up Locations University Hospital - In the discharge area on 7th Avenue South between 18th and 19th Streets or the second floor of the th4 Avenue Parking Deck. The Kirklin Clinic – In the discharge area on 6th Avenue South between 20st and 21st Streets. Hazelrig-Salter Radiation Oncology Center – In the discharge area on 6th Avenue South between 17th and 18th Streets.

Pharmacy The Kirklin Clinic – 2nd Floor: 205-801-8730 For over-the-counter medications: UAB Hospital Gift Shop - West Pavilion 1st Floor Phone: 205-934-6434 UAB Hospital Gift Shop - North Pavilion 2nd Floor Phone: 205-996-2022 Off-campus pharmacies in proximity – See Tab 4

Prosthetics UAB Orthotics and Prosthetics Clinic Phone: 205-934-9656 Located at Spain Rehabilitation Center

TAB ONE | DIRECTORY OF SERVICES 13 patient guide Social Services – see Tab 5 Inpatient: 205-934-4737 Radiation Oncology (Hazelrig Salter): 205-934-5671 Outpatient (The Kirklin Clinic): 205-801-8269 Hematology Oncology (The Kirklin Clinic) 205-801-8415

Social Services can help you with: Financial Assistance Home Care Hospice Housing Medical Equipment Medicare, Medicaid Social Security

Support Groups & Programs – see Tab 5 Support Groups: 205-934-5772 Courage Companions Emotional Support: 205-996-5364 Carepages 888-852-5521 Please visit www.carepages.com/uabhealth. Carepages provide patients and families with free, private web pages that help: Share information easily Update people all at once Post photos Receive messages of support

Surgical Waiting Areas 5th Floor 205-996-4521 6th Floor 205-996-6369 7th Floor 205-996-4532 **If questions, call Guest Services at *55 or 205-934-4322

Volunteer Opportunities – see Tab 6 UAB Comprehensive Cancer Center: 205-996-5364 UAB Volunteer Services: 205-934-4270

Wig, Hats & Hair Loss Resources – see Tab 5 American Cancer Society Patient Navigator: 205-502-9958

TAB ONE | DIRECTORY OF SERVICES 14 patient guide TAB TWO MY TREATMENT PLAN

About Your Care Team Getting the Most Out of Your Doctor Visits Medical History Calendar Appointment Log Laboratory Results Medication Log Treatment Log Symptom Management Treatment Plan Frequently Asked Questions ABOUT YOUR CARE TEAM PHYSICIANS Attending Physician: Physicians at the UAB Comprehensive Cancer Center specialize in the treatment of specific cancer diseases and conditions. The Attending Physician develops, coordinates, supervises and evaluates your treatment plan.

Medical Oncologist: A Medical Oncologist has extensive training in specific types of cancer and will typically oversee your chemotherapy and/or other medical treatments.

Surgeon: Some conditions require surgery as a part of the treatment plan. The attending Surgeon will work with you to develop an operative plan for your condition and then conduct the procedure. A cancer surgeon specializes in cancer surgery and supervises post- operative care.

Radiation Oncologist: For some conditions, radiation therapy and/or radio-surgery are recommended for the treatment of certain disease processes. A Radiation Oncologist oversees the development and monitoring of radiation treatment plans.

Gynecologic Oncologist: A gynecologic oncologist is a physician first trained in obstetrics and gynecology who has three to four additional years of training in gynecologic cancers. These specialists combine knowledge of gynecology with expertise in detecting and treating cancers of the female reproductive system.

Pediatric Oncologist: A pediatric oncologist is a doctor who specializes in the diagnosis and treatment of children and adolescents with cancer.

Psychiatrist and Psychologist: A cancer journey can be a physically and emotionally exhausting journey. A psychiatrist and/or psychologist may help evaluate and manage the psychological and emotional issues you may experience.

Oncology Fellow: Oncology Fellows are all fully licensed physicians doing an intensive and extended course of study in oncology. The Fellows work alongside the Attending Physicians, Oncologists and Surgeons to take care of patients undergoing treatment. Intern and Resident: Interns and Residents are licensed physicians completing their training in medicine. UAB is a top-ranked academic medical center and we provide hands-on training for young physicians. Interns and Residents may participate in your care in some settings while you are at UAB.

NURSES AND PHYSICIAN’S ASSISTANTS Nurse Coordinator: A Patient Care Coordinator (Nurse) helps new patients arrange and prepare for their initial visit to UAB. They will help gather medical records, schedule tests, answer questions about your visit, and connect you with services that are available to help you with your journey.

Nurse Practitioner: A Nurse Practitioner has an advanced nursing degree and is licensed to do many of the things that a physician can do. Our Nurse Practitioners are specialized in cancer care and will work with your doctors to diagnose and treat illness, perform physical exams, offer preventive care, prescribe medication, and educate you about your illness and treatment.

TAB TWO | MY TREATMENT PLAN 16 patient guide Oncology Nurse: Oncology Nurses have extensive training in cancer care and receive special certification in oncology. They specialize in the care and education of cancer patients, and frequently specialize in infusion, radiation therapy, radiology, intravenous (IV) therapy, or other areas of cancer treatment.

Physician Assistant: A Physician Assistant has extensive training in a specialized aspect of your care and is certified to conduct procedures and assist your doctors to diagnose and treat illness, perform physical examinations, offer preventive care, prescribe medication, and educate you about your illness and treatment.

Research Team: If you choose to participate in a clinical trial, additional team members may include a research program nurse, a research nurse coordinator and a doctor who is leading the study. Research Nurses coordinate clinical trials and provide patient education on the protocols and procedures of the trial.

PROFESSIONAL SUPPORT Pharmacist: A Pharmacist is a highly trained professional who prepares and dispenses your medications and chemotherapy.

Clinical Social Worker: Social Workers are generally non-nursing professionals who provide a variety of emotional support, insurance counseling and other assistance to help patients and families.

Dietitian: A Dietitian helps you choose foods and plan meals designed to aid your comfort, recovery and health.

Physical, Occupational and Respiratory Therapists: A variety of therapists may be assigned to assist you with physical difficulties that may result from your illness and/or its treatments. Therapists help in the rehabilitation process following treatments or surgery, help to strengthen gross and fine motor skills, and help patients return to work and other normal routines following their care.

Chaplain: Chaplains are available to provide spiritual and emotional support to patients and families of all faiths, including individuals without a specific faith or religion.

Patient Navigator: Navigators are trained, non-nursing professionals who are available to help you find community services, short-term housing, local transportation and referrals to community programs. One of their primary goals is to help patients overcome physical, emotional, social and financial barriers to receiving timely cancer treatment.

OTHER MEMBERS OF YOUR CARE TEAM Other Direct Care Staff: A medical assistant checks your vital signs during outpatient visits and helps nurses during certain procedures. A diagnostic technician performs tests and scans that show images of your cancer. A patient care assistant provides daily care while you are in the hospital. A phlebotomist draws your blood before chemotherapy treatments and assists nurses in infusion units. A radiation technician delivers radiation treatments. Transport assistants help move patients between buildings and procedures.

Integrative Therapy Practitioner: Integrative therapies include massage, acupuncture, Reiki, meditation or other mind/body therapies, which may help to improve your comfort and quality of life, as well as help with symptom management.

Ambassador Volunteers: Our volunteers offer a variety of services, such as greeting you at our reception area, helping you with forms and paperwork, visiting inpatients during their stays, and assisting with special events.

Angel Squad Volunteers: The Angel Squad is a special group of breast cancer supporters who are dedicated to helping breast cancer patients meet the challenges of their cancer journey.

TAB TWO | MY TREATMENT PLAN 17 patient guide GETTING THE MOST OUT OF YOUR DOCTOR VISITS To get the most out of your visits with your doctor, you should be prepared and share in the responsibility in making the office visit go smoothly. Below are some tips to help you.

PREPARING FOR YOUR VISIT • If you are meeting with a doctor for the first time, take a copy of your medical records with you, or arrange for a copy of your medical records to be sent to the doctor prior to your visit. If you cannot do this, write a short note describing health problems you have had, when they happened, and the name of the doctor who took care of you.

• If you have a particular problem that you expect will take more than 15 minutes, let the receptionist know when you make your appointment. It may be possible to allow additional time, if the office knows your needs ahead of time.

• If you arrive for an appointment and begin experiencing unusual or severe symptoms, let the receptionist know immediately.

• Bring all of the medications you are currently taking, both prescribed and over-the-counter medications, in the prescribed or correct bottle.

• Write a list of all the doctors you are currently seeing and why you see them along with their telephone numbers. Identify which doctor is your primary doctor.

TAB TWO | MY TREATMENT PLAN 18 patient guide • Keep a notebook or health diary to take with you to the doctor. Make a list of the symptoms you are experiencing and what is bothering you the most. Write down when these problems began, and what you have done (if anything) to relieve them. When your doctor walks into the room, tell him or her that you have a list of things you would like to talk about. Start with what you think is the most important. Keep this information brief and to the point if possible. If the doctor does not have time to talk about everything on your list, and you have more questions, it is ok to call the doctor’s office and talk to the nurse.

• Bring a notebook or health diary with you to write down any specific instructions from the doctor. It is often difficult to remember things when you are feeling poorly. It may be important for you to bring a family member or good friend with you to listen to the doctor’s explanations and instructions. If possible have the same family member or friend with you each time. He or she can remind you of questions you want to ask and help you recall what the doctor said.

• Ask Questions! Ask the most important questions first. If you do not understand something, ask your doctor to repeat what he or she said or ask for written material that may explain the subject more thoroughly. Always ask “why?” before you begin a new medicine, go for a medical test, or begin a treatment program. Asking “why?” may help you to better understand what is going on.

• Share your thoughts, fears and feelings with your doctor.

• At the end of the visit, repeat back in your own words your doctor’s instructions and what you need to do. Also, check your list of questions to make sure you have the answers you need.

ASKING QUESTIONS It is easy to forget questions you (or your family) may have, so you may want to write them down before you go into the doctor’s office. Here are some questions your doctor can usually answer for you: • What do I have? • What treatment do you suggest? • Are there other treatments? • How will these treatments help me? • Will I have pain? • What medicines are you giving me? What are they for? • How should I expect to feel during treatment? • What side effects, if any, can I expect to have? • Are there any side effects or unusual signs that need to be reported right away?

• What are the risks associated with treatments, medicines, etc.?

TAB TWO | MY TREATMENT PLAN 19 patient guide MY MEDICAL HISTORY (include your physician’s name, dates, phone

TAB TWO | MY TREATMENT PLAN 20 patient guide TAB TWO | MY TREATMENT PLAN 21 patient guide TAB TWO | MY TREATMENT PLAN 22 patient guide APPOINTMENT LOG

PHYSICIAN/ DATE TIME LOCATION HEALTH PROFESSIONAL

TAB TWO | MY TREATMENT PLAN 23 patient guide LAB RESULTS

DATE ORDERING PHYSICIAN RESULTS

TAB TWO | MY TREATMENT PLAN 24 patient guide MEDICATION LOG Your Pharmacy: Address: Website: Phone: Fax:

Medication: Medication: Dosage: Dosage: Reason Prescribed: Reason Prescribed: When to take: When to take: Prescribing Physician: Prescribing Physician: Medication: Medication: Dosage: Dosage: Reason Prescribed: Reason Prescribed: When to take: When to take: Prescribing Physician: Prescribing Physician: Medication: Medication: Dosage: Dosage: Reason Prescribed: Reason Prescribed: When to take: When to take: Prescribing Physician: Prescribing Physician: Medication: Medication: Dosage: Dosage: Reason Prescribed: Reason Prescribed: When to take: When to take: Prescribing Physician: Prescribing Physician: Medication: Medication: Dosage: Dosage: Reason Prescribed: Reason Prescribed: When to take: When to take: Prescribing Physician: Prescribing Physician: Medication: Medication: Dosage: Dosage: Reason Prescribed: Reason Prescribed: When to take: When to take: Prescribing Physician: Prescribing Physician: Medication: Medication: Dosage: Dosage: Reason Prescribed: Reason Prescribed: When to take: When to take: Prescribing Physician: Prescribing Physician:

TAB TWO | MY TREATMENT PLAN 25 patient guide See page 52 (which may change with additions/changes) for SYMPTOM MANAGEMENT Common Side Effects

WHAT STEPS DID YOU TAKE SYMPTOM RESULT TO EASE THE SYMPTOM?

TAB TWO | MY TREATMENT PLAN 26 patient guide MY TREATMENT PLAN

ORDERING DATE TREATMENT HOW OFTEN? PHYSICIAN

TAB TWO | MY TREATMENT PLAN 27 patient guide FREQUENTLY ASKED QUESTIONS: What do I ask my Care Team Member?

AFTER DIAGNOSIS What type of cancer do I have? What is the medical name for it? Are there other names for this same cancer? What is the difference between a benign and a malignant tumor? What stage and grade is my cancer? Has the cancer spread? If so, where? Will you send my records to another physician if I decide to get a second opinion?

BEFORE TREATMENT BEGINS What are my treatment options? Which do you recommend for me? Why? What are the risks and possible side effects of each treatment? What are the chances that the treatment will be successful? What is the goal of this treatment? What are the expected benefits of each kind of treatment? How will I know if the therapy is working? When will the treatments begin? When will they end? Will I have to stay in the hospital? How will I feel during therapy? How often will I have treatments? Will I be able to continue my normal activities during treatment? Will I have to change my normal activities? If so, for how long? What are the risks and possible side effects of each treatment? How can side effects be managed? If I have pain, how will you manage it? What can I do to prepare for treatment? What can I do to take care of myself during therapy? What effect will cancer/cancer therapies have on my eating habits? Are there any foods I should avoid? Are there any foods I could benefit from eating? Will infertility be a side effect of my treatment? Can anything be done about that? Should I consider storing sperm or eggs? What is a clinical trial? What new treatments are under study? Would a clinical trial be appropriate for me? What new treatments are being studied in clinical trials? Would a clinical trial be appropriate? What is the treatment likely to cost? Will my insurance cover the costs?

IF CANCER IS IN REMISSION AND/OR AFTER YOU HAVE COMPLETED TREATMENT Will the cancer come back? How often will you see me and for how long? Will I be able to lead a “normal life?” What kind of ongoing health needs will I have? Are there long-term side effects of the treatment or disease that may occur? How often do they occur? When are they most likely to occur? Do I need to change my diet and/or exercise program? Are there any “extra precautions” I need to take following my treatments? Will I be given a “survivorship care plan”?

TAB TWO | MY TREATMENT PLAN 28 patient guide TAB THREE UNDERSTANDING CANCER

What You Need to Know About Cancer Clinical Trials Cancer and Fertility UNDERSTANDING CANCER Words listed in italics can be found in the “Definition of Cancer Terms”, Tab 7 *WHAT YOU NEED TO KNOW ABOUT CANCER Cancer begins in cells1, the building blocks that form tissues. Tissues make up the organs of the body. Normally, cells grow and divide to form new cells as the body needs them. When cells grow old, they die, and new cells take their place. Sometimes, this orderly process goes wrong. New cells form when the body does not need them, and old cells do not die when they should. These extra cells can form a mass of tissue called a growth or tumor.

Tumors can be benign or malignant:

• Benign tumors are not cancer:

• Benign tumors are rarely life-threatening. • Generally, benign tumors can be removed, and they usually do not grow back. • Cells from benign tumors do not invade the tissues around them. • Cells from benign tumors do not spread to other parts of the body.

• Malignant tumors are cancer:

• Malignant tumors are more serious than benign tumors. They may be life-threatening. • Malignant tumors often can be removed, but sometimes they grow back. • Cells from malignant tumors can invade and damage nearby tissues and organs. • Cells from malignant tumors can spread (metastasize) to other parts of the body.

Cancer cells spread by breaking away from the original (primary) tumor and entering the bloodstream or lymphatic system. The cells can invade other organs, forming new tumors that damage these organs. The spread of cancer is called metastasis.

Most cancers are named for where they start. For example, lung cancer starts in the lung, and breast cancer starts in the breast. Lymphoma is cancer that starts in the lymphatic system. And leukemia is cancer that starts in white blood cells (leukocytes).

When cancer spreads and forms a new tumor in another part of the body, the new tumor has the same kind of abnormal cells and the same name as the primary tumor. For example, if prostate cancer spreads to the bones, the cancer cells in the bones are actually prostate cancer cells. The disease is metastatic prostate cancer, not bone cancer. For that reason, it is treated as prostate cancer, not bone cancer. Doctors sometimes call the new tumor “distant” or metastatic disease.

TAB THREE | UNDERSTANDING CANCER 30 patient guide RISK FACTORS Doctors often cannot explain why one person develops cancer and another does not. But research shows that certain risk factors increase the chance that a person will develop cancer. These are the most common risk factors for cancer:

• Growing older

• Tobacco

• Sunlight

• Ionizing radiation

• Certain chemicals and other substances

• Some viruses and bacteria

• Certain hormones

• Family history of cancer

• Alcohol

• Poor diet, lack of physical activity or being overweight

Many of these risk factors can be avoided. Others, such as family history, cannot be avoided. People can help protect themselves by avoiding known risk factors whenever possible.

If you think you may be at risk for cancer, you should discuss this concern with your doctor. You may want to ask about reducing your risk and about a schedule for check-ups.

Over time, several factors may act together to cause normal cells to become cancerous. When thinking about your risk of getting cancer, these are some things to keep in mind:

• Not everything causes cancer.

• Cancer is not caused by an injury, such as a bump or bruise.

• Cancer is not contagious. Although being infected with certain viruses or bacteria may increase the risk of some types of cancer, no one can “catch” cancer from another person.

• Having one or more risk factors does not mean that you will get cancer. Most people who have risk factors never develop cancer.

• Some people are more sensitive than others to the known risk factors.

The sections below have more detailed information about the most common risk factors for cancer. You also may want to read the National Cancer Institute booklet Cancer and the Environment.

TAB THREE | UNDERSTANDING CANCER 31 patient guide Growing Older One of the main risk factors for cancer is growing older. Most cancers occur in people over the age of 65. But people of all ages, including children, can get cancer, too.

Tobacco Tobacco use is the most preventable cause of cancer-related death. Each year, more than 180,000 Americans die from cancer that is related to tobacco use. Using tobacco products or regularly being around tobacco smoke (environmental or secondhand smoke) increases the risk of cancer.

Smokers are more likely than non-smokers to develop cancer of the lung, larynx (voice box), mouth, esophagus, bladder, kidney, throat, stomach, pancreas or cervix. They also are more likely to develop acute myeloid leukemia (cancer that starts in blood cells).

People who use smokeless tobacco (snuff or chewing tobacco) are at increased risk of cancer of the mouth. Quitting is important for anyone who uses tobacco—even people who have used it for many years. The risk of cancer for people who quit is lower than the risk for people who continue to use tobacco. (But the risk of cancer is generally lowest among those who never used tobacco.) Also, for people who have already had cancer, quitting may reduce the chance of getting another cancer.

There are many resources to help people stop using tobacco: Staff at the NCI’s Smoking Quitline (1–877–44U–QUIT) and at LiveHelp (click on “Need Help?” at http:// www.cancer.gov) can talk with you about ways to quit smoking and about groups that help smokers who want to quit. Groups may offer counseling in person or by telephone. A federal government website, http:// www.smokefree.gov, has an online guide to quitting smoking and a list of other resources.

Doctors and dentists can help their patients find local programs or trained professionals who help people stop using tobacco. They can also suggest medicine or nicotine replacement therapy, such as a patch, gum, lozenge, nasal spray or inhalers.

Sunlight Ultraviolet (UV) radiation comes from the sun, sunlamps and tanning booths. It causes early aging of the skin and skin damage that can lead to skin cancer. Doctors encourage people of all ages to limit their time in the sun and to avoid other sources of UV radiation:

It is best to avoid the midday sun (from midmorning to late afternoon) whenever possible. You also should protect yourself from UV radiation reflected by sand, water, snow and ice. UV radiation can penetrate light clothing, windshields and windows.

Wear long sleeves, long pants, wide-brim hats and sunglasses with lenses that absorb UV. Use sunscreen. Sunscreen may help prevent skin cancer, especially sunscreen with a sun protection factor (SPF) of at least 15. But sunscreens cannot replace avoiding the sun and wearing clothing to protect the skin. Stay away from sunlamps and tanning booths. They are no safer than sunlight.

TAB THREE | UNDERSTANDING CANCER 32 patient guide Ionizing Radiation Ionizing radiation can cause cell damage that leads to cancer. This kind of radiation comes from rays that enter the Earth’s atmosphere from outer space, radioactive fallout, radon gas, x-rays and other sources. Radioactive fallout can come from accidents at nuclear power plants or from the production, testing or use of atomic weapons. People exposed to fallout may have an increased risk of cancer, especially leukemia and cancers of the thyroid, breast, lung and stomach. Radon is a radioactive gas that you cannot see, smell or taste. It forms in soil and rocks. People who work in mines may be exposed to radon. In some parts of the country, radon is found in houses. People exposed to radon are at increased risk of lung cancer.

Radiation is used for many medical procedures including:

• Doctors use radiation (low-dose x-rays) to take pictures of the inside of the body. These pictures help to diagnose broken bones and other problems.

• Doctors use radiation therapy (high-dose radiation from large machines or from radioactive substances) to treat cancer. The risk of cancer from low-dose x-rays is extremely small. The risk from radiation therapy is slightly higher. For both, the benefit nearly always outweighs the small risk

You should talk with your doctor if you are concerned that you may be at risk for cancer due to radiation. If you live in a part of the country that has radon, you may wish to test your home for high levels of the gas. The home radon test is easy to use and inexpensive. Most hardware stores sell the test kit.

You should talk with your doctor or dentist about the need for each x-ray and CT scan. You should also ask about shields to protect parts of the body that are not in the picture.

Cancer patients may want to talk with their doctor about how radiation treatment could increase their risk of a second cancer later on.

Certain Chemicals and Other Substances People who have certain jobs (such as painters, construction workers and those in the chemical industry) have an increased risk of cancer. Many studies have shown that exposure to asbestos, benzene, benzidine, cadmium, nickel or vinyl chloride in the workplace can cause cancer.

Follow instructions and safety tips to avoid or reduce contact with harmful substances both at work and at home. Although the risk is highest for workers with years of exposure, it makes sense to be careful at home when handling pesticides, used engine oil, paint, solvents and other chemicals.

TAB THREE | UNDERSTANDING CANCER 33 patient guide Some Viruses and Bacteria Being infected with certain viruses or bacteria may increase the risk of developing cancer:

• Human papillomaviruses (HPVs): HPV infection is the main cause of cervical cancer. It also may be a risk factor for other types of cancer.

• Hepatitis B and hepatitis C viruses: Liver cancer can develop after many years of infection with hepatitis B or hepatitis C.

• Human T-cell leukemia/lymphoma virus (HTLV–1): Infection with HTLV–1 increases a person’s risk of lymphoma and leukemia.

• Human immunodeficiency virus (HIV):HIV is the virus that causes AIDS. People who have HIV infection are at greater risk of cancer, such as lymphoma and a rare cancer called Kaposi’s sarcoma.

• Epstein-Barr virus (EBV): Infection with EBV has been linked to an increased risk of lymphoma.

• Human herpesvirus 8 (HHV8): This virus is a risk factor for Kaposi’s sarcoma.

• Helicobacter pylori: This bacterium can cause stomach ulcers. It also can cause stomach cancer and lymphoma in the stomach lining.

Do not have unprotected sex or share needles. You can get an HPV infection by having sex with someone who is infected. You can get hepatitis B, hepatitis C or HIV from having unprotected sex or sharing needles with someone who is infected.

You may want to consider getting the vaccine that prevents hepatitis B infection. Health care workers and others who come into contact with other people’s blood should ask their doctor about this vaccine.

If you think you may be at risk for HIV or hepatitis infection, ask your doctor about being tested. These infections may not cause symptoms, but blood tests can show whether the virus is present. If so, the doctor may suggest treatment. Also, the doctor can tell you how to avoid infecting other people.

If you have stomach problems, see a doctor. Infection with H. pylori can be detected and treated.

Certain Hormones Doctors may recommend hormones (estrogen alone or estrogen along with progestin) to help control problems (such as hot flashes, vaginal dryness and thinning bones) that may occur duringmenopause . However, studies show that menopausal hormone therapy can cause serious side effects. Hormones may increase the risk of breast cancer, heart attack, stroke or blood clots. A woman considering menopausal hormone therapy should discuss the possible risks and benefits with her doctor.

TAB THREE | UNDERSTANDING CANCER 34 patient guide Diethylstilbestrol (DES), a form of estrogen, was given to some pregnant women in the United States between about 1940 and 1971. Women who took DES during pregnancy may have a slightly higher risk of developing breast cancer. Their daughters have an increased risk of developing a rare type of cancer of the cervix. The possible effects on their sons are under study. Women who believe they took DES and daughters who may have been exposed to DES before birth should talk with their doctor about having check-ups.

Family History of Cancer Most cancers develop because of changes (mutations) in genes. A normal cell may become a cancer cell after a series of gene changes occur. Tobacco use, certain viruses or other factors in a person’s lifestyle or environment can cause such changes in some types of cells. These changes happen during a person’s lifetime and cannot be passed on to one’s children.

There are certain types of cancer that do occur more often in some families than in the rest of the population. For example, melanoma and cancers of the breast, ovary, prostate and colon sometimes run in families. Several cases of the same cancer type in a family may be linked to inherited gene changes, which may increase the chance of developing cancers. However, most of the time, multiple cases of cancer in a family are just a matter of chance.

If you think you may have a pattern of a certain type of cancer in your family, you may want to talk to your doctor, who may suggest ways to reduce your risk. Your doctor also may suggest exams that can detect cancer early.

You may want to ask your doctor about genetic testing. These tests can check for certain inherited gene changes that increase the chance of developing cancer. But inheriting a gene change does not mean that you will definitely develop cancer. It means that you have an increased chance of developing the disease.

Alcohol Having more than two drinks each day for many years may increase the chance of developing cancers of the mouth, throat, esophagus, larynx, liver and breast. The risk increases with the amount of alcohol that a person drinks. For most of these cancers, the risk is higher for a drinker who uses tobacco.

Doctors advise people who drink to do so in moderation. Drinking in moderation means no more than one drink per day for women and no more than two drinks per day for men.

Poor Diet, Lack of Physical Activity or Being Overweight People who have a poor diet, do not have enough physical activity, or are overweight may be at increased risk of several types of cancer. For example, studies suggest that people whose diet is high in fat have an increased risk of cancers of the colon, uterus and prostate. Lack of physical activity and being overweight are risk factors for cancers of the breast, colon, esophagus, kidney and uterus.

Having a healthy diet, being physically active and maintaining a healthy weight may help reduce cancer risk. Doctors suggest the following:

TAB THREE | UNDERSTANDING CANCER 35 patient guide Eat well: A healthy diet includes plenty of foods that are high in fiber, vitamins and minerals. This includes whole-grain breads and cereals and five to nine servings of fruits and vegetables every day. Also, a healthy diet means limiting foods high in fat (such as butter, whole milk, fried foods and red meat).

Be active and maintain a healthy weight: Physical activity can help control your weight and reduce body fat. Most scientists agree that it is a good idea for an adult to have moderate physical activity (such as brisk walking) for at least 30 minutes on five or more days each week.

Screening Some types of cancer can be found before they cause symptoms. Checking for cancer (or for conditions that may lead to cancer) in people who have no symptoms is called screening.

Screening can help doctors find and treat some types of cancer early. Generally, cancer treatment is more effective when the disease is found early.

Screening tests are used widely to check for cancers of the breast, cervix, colon and rectum:

Breast: A mammogram is the best tool doctors have to find breast cancer early. A mammogram is a picture of the breast made with x-rays. The NCI recommends that women in their 40s and older have mammograms every one to two years. Women who are at higher-than-average risk of breast cancer should talk with their health care provider about whether to have mammograms before age 40 and how often to have them.

Cervix: The Pap test (sometimes called Pap smear) is used to check cells from the cervix. The doctor scrapes a sample of cells from the cervix. A lab checks the cells for cancer or changes that may lead to cancer (including changes caused by human papillomavirus, the most important risk factor for cancer of the cervix). Women should begin having Pap tests when they reach age 21 (whichever comes first). Most women should have a Pap test at least once every three years.

Colon and rectum: A number of screening tests are used to detect polyps (growths), cancer or other problems in the colon and rectum. People aged 50 and older should be screened. People who have a higher- than-average risk of cancer of the colon or rectum should talk with their doctor about whether to have screening tests before age 50 and how often to have them.

• Fecal Occult Blood Test: Sometimes cancer or polyps bleed. This test can detect tiny amounts of blood in the stool.

• Sigmoidoscopy: The doctor checks inside the rectum and lower part of the colon with a lighted tube called a sigmoidoscope. The doctor can usually remove polyps through the tube.

• Colonoscopy: The doctor examines inside the rectum and entire colon using a long, lighted tube called a colonoscope. The doctor can usually remove polyps through the tube.

• Double-contrast Barium Enema: This procedure involves several x-rays of the colon and rectum. The patient is given an enema with a barium solution, and air is pumped into the rectum. The barium and air improve the x-ray images of the colon and rectum.

TAB THREE | UNDERSTANDING CANCER 36 patient guide • Digital Rectal Exam: A rectal exam is often part of a routine physical exam. The health care provider inserts a lubricated, gloved finger into the rectum to feel for abnormal areas. A digital rectal exam allows for examination of only the lowest part of the rectum.

Prostate: Men should make an informed decision with their doctor about whether to be tested for prostate cancer. Research has not yet proven that the potential benefits of testing outweigh the harms of testing and treatment. Men should not be tested without learning about what we know and don’t know about the risks and possible benefits of testing and treatment. Starting at age 50, talk to your doctor about the pros and cons of testing so you can decide if testing is the right choice for you. If you are African American or have a father or brother who had prostate cancer before age 65, you should have this talk with your doctor starting at age 45. If you decide to be tested, you should have the PSA blood test with or without a digital rectal exam. How often you are tested will depend on your PSA level.

You may have heard about other tests to check for cancer in other parts of the body. At this time, we do not know whether routine screening with these other tests saves lives. The NCI is supporting research to learn more about screening for cancers of the breast, cervix, colon, lung, ovary, prostate and skin. See “The Promise of Cancer Research” section on page 42.

Doctors consider many factors before they suggest a screening test. They weigh factors related to the test and to the cancer that the test can detect. They also pay special attention to a person’s risk for developing certain types of cancer. For example, doctors think about the person’s age, medical history, general health, family history and lifestyle. They consider how accurate the test is. In addition, doctors keep in mind the possible harms of the screening test itself. They also look at the risk of follow-up tests or surgery that the person might need to see if an abnormal test result means cancer. Doctors also think about the risks and benefits of treatment if testing finds cancer. They consider how well the treatment works and what side effects it causes.

You may want to talk with your doctor about the possible benefits and harms of being checked for cancer. The decision to be screened, like many other medical decisions, is a personal one. Each person should decide after learning about the pros and cons of screening.

The National Cancer Institute has several fact sheets about screening tests. For more information, please visit http://www.cancer.gov/cancertopics/factsheet.

You may want to ask the doctor the following questions about screening:

• Which tests do you recommend for me? Why? • How much do the tests cost? Will my health insurance help pay for screening tests? • Do the tests hurt? Are there any risks? • How soon after the tests will I learn the results? • If the results show a problem, how will you learn if I have cancer?

TAB THREE | UNDERSTANDING CANCER 37 patient guide Symptoms Cancer can cause many different symptoms. These are some of them:

• A thickening or lump in the breast or any other part of the body • A new mole or a change in an existing mole • A sore that does not heal • Hoarseness or a cough that does not go away • Changes in bowel or bladder habits • Discomfort after eating • A hard time swallowing • Weight gain or loss with no known reason • Unusual bleeding or discharge • Feeling weak or very tired

Most often, these symptoms are not due to cancer. They may also be caused by benign tumors or other problems. Only a doctor can tell for sure. Anyone with these symptoms or other changes in health should see a doctor to diagnose and treat problems as early as possible. Usually, early cancer does not cause pain. If you have symptoms, do not wait to feel pain before seeing a doctor.

Diagnosis If you have a symptom or your screening test result suggests cancer, the doctor must find out whether it is due to cancer or to some other cause. The doctor may ask about your personal and family medical history and do a physical exam. The doctor also may order lab tests, x-rays, or other tests or procedures.

Lab Tests Tests of the blood, urine or other fluids can help doctors make a diagnosis. These tests can show how well an organ (such as the kidney) is doing its job. Also, high amounts of some substances may be a sign of cancer. These substances are often called tumor markers. However, abnormal lab results are not a sure sign of cancer. Doctors cannot rely on lab tests alone to diagnose cancer. The NCI offers several fact sheets about lab tests. See the “National Cancer Institute Publications” section on page 61 to learn how to get fact sheets.

Imaging Procedures Imaging procedures create pictures of areas inside your body that help the doctor see whether a tumor is present. These pictures can be made in several ways:

X-rays: X-rays are the most common way to view organs and bones inside the body.

CT scan: An x-ray machine linked to a computer takes a series of detailed pictures of your organs. You may receive a contrast material (such as dye) to make these pictures easier to read.

TAB THREE | UNDERSTANDING CANCER 38 patient guide Radionuclide scan: You receive an injection of a small amount of radioactive material. It flows through your bloodstream and collects in certain bones or organs. A machine called a scanner detects and measures the radioactivity. The scanner creates pictures of bones or organs on a computer screen or on film. Your body gets rid of the radioactive substance quickly.

Ultrasound: An ultrasound device sends out sound waves that people cannot hear. The waves bounce off tissues inside your body like an echo. A computer uses these echoes to create a picture called a sonogram.

MRI: A strong magnet linked to a computer is used to make detailed pictures of areas in your body. Your doctor can view these pictures on a monitor and can print them on film.

PET scan: You receive an injection of a small amount of radioactive material. A machine makes pictures that show chemical activities in the body. Cancer cells sometimes show up as areas of high activity.

Biopsy In most cases, doctors need to do a biopsy to make a diagnosis of cancer. For a biopsy, the doctor removes a sample of tissue and sends it to a lab. A pathologist looks at the tissue under a microscope. The sample may be removed in several ways:

• With a needle: The doctor uses a needle to withdraw tissue or fluid.

• With an endoscope: The doctor uses a thin, lighted tube (an endoscope) to look at areas inside the body. The doctor can remove tissue or cells through the tube.

• With surgery: Surgery may be excisional or incisional.

• In an excisional biopsy: The surgeon removes the entire tumor. Often some of the normal tissue around the tumor also is removed.

• In an incisional biopsy: The surgeon removes just part of the tumor or a tissue sample.

You may want to ask the doctor these questions before having a biopsy:

• Where will I go for the biopsy? • How long will it take? Will I be awake? Will it hurt? • Are there any risks? What are the chances of infection or bleeding after the procedure? • How soon will I know the results? • If I do have cancer, who will talk to me about the next steps? When?

Staging To plan the best treatment for cancer, the doctor needs to know the extent (stage) of your disease. For most cancers (such as breast, lung, prostate or colon cancer), the stage is based on the size of the tumor and whether the cancer has spread to lymph nodes or other parts of the body. The doctor may order x-rays, lab tests, and other tests or procedures to learn the extent of the disease.

TAB THREE | UNDERSTANDING CANCER 39 patient guide Treatment Many people with cancer want to take an active part in making decisions about their medical care. It is natural to want to learn all you can about your disease and treatment choices. However, shock and stress after the diagnosis can make it hard to think of everything you want to ask the doctor. It often helps to make a list of questions before an appointment.

To help remember what the doctor says, you may take notes or ask whether you may use a tape recorder. Some people also want to have a family member or friend with them when they talk to the doctor—to take part in the discussion, to take notes or just to listen.

You do not need to ask all your questions at once. You will have other chances to ask the doctor or nurse to explain things that are not clear and to ask for more information.

Your doctor may refer you to a specialist, or you may ask for a referral. Specialists who treat cancer include surgeons, medical oncologists, hematologists and radiation oncologists.

Getting a Second Opinion Before starting treatment, you may want a second opinion about your diagnosis and treatment plan. Many insurance companies will cover a second opinion if your doctor requests it. It may take some time and effort to gather medical records and arrange to see another doctor. Usually it is not a problem to take several weeks to get a second opinion. In most cases, the delay in starting treatment will not make treatment less effective. But some people with cancer need treatment right away. To make sure, you should discuss this delay with your doctor.

There are a number of ways to find a doctor for a second opinion: • Your doctor may refer you to one or more specialists. At cancer centers, several specialists often work together as a team.

• NCI’s Cancer Information Service, at 1–800–4–CANCER, can tell you about nearby treatment centers. Information Specialists also can provide online assistance through Live Help at http://www.cancer.gov.

• A local or state medical society, a nearby hospital or a medical school can usually provide the names of specialists.

• The American Board of Medical Specialties (ABMS) has a list of doctors who have had training and passed exams in their specialty. You can find this list in the Official ABMS Directory of Board Certified Medical Specialists. This directory is in most public libraries. Also, ABMS offers this information at http://www.abms.org. (Click on “Who’s Certified.”)

• The NCI provides a fact sheet called “How To Find a Doctor or Treatment Facility If You Have Cancer.”

• Nonprofit organizations with an interest in cancer may be of help. See the NCI fact sheet “National Organizations That Offer Services to People With Cancer and Their Families.”

TAB THREE | UNDERSTANDING CANCER 40 patient guide Treatment Methods The treatment plan depends mainly on the type of cancer and the stage of the disease.

Doctors also consider the patient’s age and general health. Often, the goal of treatment is to cure the cancer. In other cases, the goal is to control the disease or to reduce symptoms for as long as possible. The treatment plan may change over time. Most treatment plans include surgery, radiation therapy and/or chemotherapy. Some involve hormone therapy or biological therapy. In addition, stem cell transplantation may be used so that a patient can receive very high doses of chemotherapy or radiation therapy.

Some cancers respond best to a single type of treatment. Others may respond best to a combination of treatments. Treatments may work in a specific area (local therapy) or throughout the body (systemic therapy):

Local therapy removes or destroys cancer in just one part of the body. Surgery to remove a tumor is local therapy. Radiation to shrink or destroy a tumor also is usually local therapy.

Systemic therapy sends drugs or substances through the bloodstream to destroy cancer cells all over the body. It kills or slows the growth of cancer cells that may have spread beyond the original tumor. Chemotherapy, hormone therapy and biological therapy are usually systemic therapy.

Your doctor can describe your treatment choices and the expected results. You and your doctor can work together to decide on a treatment plan that is best for you.

Because cancer treatments often damage healthy cells and tissues, side effects are common. Side effects depend mainly on the type and extent of the treatment. Side effects may not be the same for each person, and they may change from one treatment session to the next.

Before treatment starts, the health care team will explain possible side effects and suggest ways to help you manage them. This team may include nurses, a dietitian, a physical therapist and others. The NCI provides booklets about cancer treatments and coping with side effects. These include Radiation Therapy and You, Chemotherapy and You, Biological Therapy, and Eating Hints for Cancer Patients.

At any stage of cancer, supportive care is available to relieve the side effects of therapy, to control pain and other symptoms, and to ease emotional and practical problems.

Information about supportive care is available on NCI’s Web site at www.cancer.gov/cancertopics/ coping and from Information Specialists at 1–800–4–CANCER.

You may want to talk to the doctor about taking part in a clinical trial (a research study of new treatment methods). The section on “Clinical Trials” under Tab 3 can provide you with more information.

Surgery In most cases, the surgeon removes the tumor and some tissue around it. Removing nearby tissue may help prevent the tumor from growing back. The surgeon may also remove some nearby lymph nodes.

The side effects of surgery depend mainly on the size and location of the tumor and the type of operation. It takes time to heal after surgery. The time needed to recover is different for each type of surgery and each person. It is common to feel tired or weak for awhile.

TAB THREE | UNDERSTANDING CANCER 41 patient guide Most people are uncomfortable for the first few days after surgery. However, medicine can help control the pain. Before surgery, you should discuss the plan for pain relief with the doctor or nurse. The doctor can adjust the plan if needed.

Some people worry that having surgery, or even a biopsy, can cause cancer to spread. This seldom happens. Surgeons use special methods and take many steps to prevent cancer cells from spreading. For example, if they must remove tissue from more than one area, they use different tools for each one. This approach helps reduce the chance that cancer cells will spread to healthy tissue.

Similarly, some people worry that exposing cancer to air during surgery will cause the disease to spread. This is not true. Air does not make cancer spread.

Radiation Therapy Radiation therapy (also called radiotherapy) uses high-energy rays to kill cancer cells. Doctors use several types of radiation therapy. Some people receive a combination of treatments:

External radiation: Radiation therapy comes from a large machine called a linear accelerator, and a therapy treatment plan is done specifically for each person. Radiation therapy is done at a clinic or hospital, and most people will go every day, Monday through Friday, for treatments for about 4 to 6 weeks.

Internal radiation (implanted radiation or brachytherapy): The radiation comes from radioactive material placed in seeds, needles or thin plastic tubes which are placed inside or near specific tissue. Most of the procedures are done as outpatient treatments, but some procedures may require a patient to stay in the hospital for several days.

Systemic radiation: The radiation comes from liquid or capsules containing radioactive material that travels throughout the body, after being swallowed or injected into the patient. This type of radiation therapy can be used to treat cancer or control pain from cancer that has spread to the bone. Only a few types of cancer are currently treated in this way.

The side effects of radiation therapy depend mainly on the dose and type of radiation you receive and the part of your body that is treated. For example, radiation to your abdomen can cause nausea, vomiting and diarrhea. Your skin in the treated area may become red, dry and tender. You also may lose your hair in the treated area.

You may become extremely tired during radiation therapy, especially in the later weeks of treatment. Resting is important, but doctors usually advise patients to try to stay as active as they can.

Fortunately, most side effects go away in time. In the meantime, there are ways to reduce discomfort. If you have a side effect that is especially severe, the doctor may suggest a break in your treatment.

Chemotherapy Chemotherapy is the use of drugs that kill cancer cells. Most patients receive chemotherapy by mouth or intravenously, i.e., through a vein. Either way, the drugs enter the bloodstream and can affect cancer cells all over the body. Chemotherapy is usually given in cycles. People receive treatment for one or more days, then have a recovery period of several days or weeks before the next treatment session. Most people have their treatment in an outpatient part of the hospital, at the doctor’s office or at home. Some may need to stay in the hospital during chemotherapy.

TAB THREE | UNDERSTANDING CANCER 42 patient guide Side effects depend mainly on the specific drugs and the dose. The drugs affect cancer cells and other cells that divide rapidly:

• Blood Cells: When drugs damage healthy blood cells, you are more likely to get infections, to bruise or bleed easily, and to feel weak and tired.

• Cells in Hair Roots: Chemotherapy can cause hair loss. Your hair will grow back, but it may be somewhat different in color and texture.

• Cells that Line the Digestive Tract: Chemotherapy can cause poor appetite, nausea and vomiting, diarrhea, or mouth and lip sores.

Some drugs can affect fertility. Women may be unable to become pregnant, and men may not be able to father a child. Although the side effects of chemotherapy can be distressing, most of them are temporary. Your doctor can usually treat or control them.

Hormone Therapy Some cancers need hormones to grow. Hormone therapy keeps cancer cells from getting or using the hormones they need. It is systemic therapy. Hormone therapy uses drugs or surgery:

Drugs: The doctor gives medicine that stops the production of certain hormones or prevents the hormones from working.

Surgery: The surgeon removes organs (such as the ovaries or testicles) that make hormones. The side effects of hormone therapy depend on the type of therapy. They include weight gain, hot flashes, nausea and changes in fertility. In women, hormone therapy may make menstrual periods stop or become irregular and may cause vaginal dryness. In men, hormone therapy may cause impotence, loss of sexual desire, and breast growth or tenderness.

Biological Therapy Biological therapy is another type of systemic therapy. It helps the immune system (the body’s natural defense system) fight cancer. For example, certain patients with bladder cancer receiveBCG solution after surgery. The doctor uses a catheter to put a solution in the bladder that contains live, weakened bacteria that stimulate the immune system to kill cancer cells. BCG can irritate the bladder and cause other side effects, including a low-grade fever or chills.

Most other types of biological therapy are given intravenously to travel through the bloodstream. Some people develop a rash where the therapy is injected, while others have flu-like symptoms such as fever, chills, headache, muscle aches, fatigue, weakness and nausea. Biological therapy also can cause more serious side effects, such as changes in blood pressure and breathing problems. Biological therapy is usually given at the doctor’s office, clinic or hospital.

TAB THREE | UNDERSTANDING CANCER 43 patient guide Stem Cell Transplantation Transplantation of blood-forming stem cells enables patients to receive high doses of chemotherapy, radiation or both. The high doses destroy both cancer cells and normal blood cells in the bone marrow. After the treatment, the patient receives healthy, blood-forming stem cells through a flexible tube placed in a large vein. New blood cells develop from the transplanted stem cells. Stem cells may be taken from the patient before the high-dose treatment, or they may come from another person. Patients stay in the hospital for this treatment.

The side effects of high-dose therapy and stem cell transplantation include infection and bleeding. In addition, graft-versus-host disease (GVHD) may occur in people who receive stem cells from a donor. In GVHD, the donated stem cells attack the patient’s tissues. Most often, GVHD affects the liver, skin or digestive tract. GVHD can be severe or even fatal. It can occur any time after the transplant, even years later. Drugs may help prevent, treat or control GVHD.

Complementary and Alternative Medicine Some people with cancer use complementary and alternative medicine (CAM):

• An approach is generally called complementary medicine when it is used along with standard treatment.

• An approach is called alternative medicine when it is used instead of standard treatment.

• Acupuncture, massage therapy, herbal products, vitamins or special diets, visualization, meditation, and spiritual healing are types of CAM. Many people say that CAM helps them feel better. However, some types of CAM may change the way standard treatment works. These changes could be harmful. Other types of CAM could be harmful even if used alone. If you are in treatment, always speak to your physician before using any type of CAM.

• You also may find materials from the National Center for Complementary and Alternative Medicine, another part of the National Institutes of Health. You can reach the NCCAM Clearinghouse toll-free at 1–888–644–6226 (voice) and 1–866–464–3615 (TTY). In addition, you can visit the Center’s Website at http://www.nccam.nih.gov or send an email to [email protected].

You may want to ask the doctor these questions before you decide to use CAM:

• What benefits can I expect from this therapy? • What are its risks? • Do the expected benefits outweigh the risks? • What side effects should I watch for? • Will the therapy change the way my cancer treatment works? Could this be harmful? • Is this therapy under study in a clinical trial? If so, who sponsors the trial? • Will my health insurance pay for this therapy?

As reminder, always discuss any complimentary or alternative therapies you may be considering with your doctor or nurse before starting. Some nutritional supplements or vitamins may interfere with your chemo or radiation therapy or may not be appropriate for your condition.

TAB THREE | UNDERSTANDING CANCER 44 patient guide Nutrition and Physical Activity It is important for people with cancer to take care of themselves. Taking care of yourself includes eating well and staying as active as you can. You need enough calories to maintain a good weight. You also need enough protein to keep up your strength. Eating well may help you feel better and have more energy.

Sometimes, especially during or soon after treatment, you may not feel like eating. You may be uncomfortable or tired. You may find that foods do not taste as good as they used to. In addition, the side effects of treatment (such as poor appetite, nausea, vomiting or mouth sores) can be a problem. The doctor, dietitian or other health care provider can suggest ways to eat well. Also, the NCI booklet Eating Hints for Cancer Patients has many useful ideas and recipes.

Many people find they feel better when they stay active. Walking, yoga, swimming and other activities can keep you strong and increase your energy. Exercise may reduce nausea and pain and make treatment easier to handle. It also can help relieve stress. Whatever physical activity you choose, be sure to talk to your doctor before you start. Also, if your activity causes you pain or other problems, be sure to let your doctor or nurse know about it.

Follow-up Care Advances in early detection and treatment mean that many people with cancer are cured. But doctors can never be certain that the cancer will not come back. Undetected cancer cells can remain in the body after treatment. Although the cancer seems to be completely removed or destroyed, it can return. Doctors call this a recurrence.

To find out whether the cancer has returned, your doctor may do a physical exam and order lab tests, x-rays and other tests. If you have a recurrence, you and your doctor will decide on new treatment goals and a new treatment plan. During follow-up exams, the doctor also checks for other problems, such as side effects from cancer therapy that can arise long after treatment. Check-ups help ensure that changes in health are noted and treated if needed. Between scheduled visits, you should contact the doctor if any health problems occur.

Facing Forward Series: Life After Cancer Treatment is an NCI booklet for people who have completed their treatment. It answers questions about follow-up care and other concerns. It has tips for making the best use of medical visits. It also suggests ways to talk with the doctor about creating a plan of action for recovery and future health.

Clinical Trials Researchers all over the world are looking for new and better ways to prevent, detect, diagnose and treat cancer. Much of this is done through clinical trials. A clinical trial is one of the major stages during the long and carefully documented research process necessary for discovering new treatments. The search for new treatments begins in the laboratory. If an approach seems promising in the lab, the next step is to see how the treatment affects cancer in animals and whether it has harmful effects. Of course, treatments that work well in the lab or in animals do not always work well in people. Clinical trials are needed to find out whether new approaches to cancer prevention, detection, diagnosis and treatment are safe and effective.

Clinical trials contribute to knowledge and progress against cancer. Research already has led to many advances, and scientists continue to search for more effective approaches. Because of progress made through clinical trials, many people treated for cancer are living longer. Many of these cancer survivors also have a better quality of life compared to survivors in the past.

TAB THREE | UNDERSTANDING CANCER 45 patient guide What are clinical trials? Clinical trials, also called cancer treatment or research studies, test new treatments in people with cancer. The goal of this research is to find better ways to prevent, detect and treat cancer and to enhance the quality of life in cancer patients. Clinical trials test many types of treatments, or new methods such as gene therapy.

A clinical trial is one of the major stages during the long and carefully documented research process necessary for discovering new treatments. The search for new treatments begins in the laboratory, where scientists first develop and test new ideas. Studies are done with cancer patients to find out whether promising treatments are safe and effective.

Why are clinical trials important? First, clinical trials contribute to knowledge and progress against cancer. If a new treatment proves effective in a study, it may become a new standard treatment that can help many patients. Many of today’s most effective standard treatments are based on previous study results. Examples include treatments for breast, colon, rectal and childhood cancers. Clinical trials may also answer important scientific questions and suggest future research directions. Because of progress made through clinical trials, many people treated for cancer are now living longer.

Second, the patients who take part may be helped personally by the treatments they receive. They get up- to-date care from cancer experts, and they receive either a new treatment being tested or the best available standard treatment for their cancer. Of course, there is no guarantee that a new treatment being tested or a standard treatment will produce good results. New treatments also may have unknown risks. But if a new treatment proves effective or more effective than standard treatment, study patients who receive it may be among the first to benefit. Some patients receive only standard treatment and benefit from it. In the past, clinical trials were sometimes seen as a last resort for people who had no other treatment choices. Today, patients with common cancers often choose to receive their first treatment in a clinical trial.

What is it Like To Receive Treatment in a Clinical Trial? When you take part in a clinical trial, you receive your treatment in a cancer center, hospital, clinic and/or doctor’s office. Doctors, nurses, social workers and other health professionals may be part of your treatment team. They will follow your progress closely. You may have more tests and doctor visits than you would if you were not taking part in a study. You will follow a treatment plan your doctor prescribes, and you may also have other responsibilities such as keeping a log or filling out forms about your health. Some studies continue to check on patients even after their treatment is over.

Clinical Trial Safety There are several procedures in place, as part of the protocols, to protect the safety of the people who participate. Two groups that oversee the safety procedures are the organization that sponsors the study (for example, the National Cancer Institute) and the Institutional Review Board (IRB) that oversees clinical research in the health care institution. The IRB includes physicians, other health care providers, consumers and sometimes members of the clergy, who do not have any personal interest in the results of the study. As neutral reviewers, they ensure that the study is conducted fairly and that participants are not likely to be harmed.

TAB THREE | UNDERSTANDING CANCER 46 patient guide Phase III trials also have a special group called a Data Safety and Monitoring Committee that looks at the test results, monitors the safety of the participants and decides whether the study should go forward as originally planned.

Types of Clinical Trials

• Phase I Trials are the first studies to evaluate how a new drug should be administered (orally, intravenously, by injection), how often and in what dosage.

• Phase II Trials provide preliminary information about how well the new drug works, and generates more information about its safety and benefits. A Phase II study usually focuses on a particular type of cancer.

• Phase III Trials compare a promising new drug, combination of drugs or procedure with a current standard of treatment.

• Phase IV Trials include the continuing evaluation that takes place after FDA approval, when the drug is already on the market and available for general use (post-marketing surveillance).

For more information:

• Talk with your physician

• Visit the UAB Comprehensive Cancer Center’s Clinical Studies website at: www.uab.edu/cancer

• Visit the National Cancer Institute’s website at www.cancer.gov

Cancer and Fertility Cancer and other serious medical conditions may threaten an individual or couple’s chance of having children in the future. Although many people return to good health after successfully facing cancer, treatments such as chemotherapy and radiation may make it difficult for men and women to have a baby. The UAB Division of Reproductive Endocrinology and Infertility offers the most advanced treatments for fertility preservation and restoration. The clinic’s experts will assist you and your oncologist in deciding which options are best for you prior to chemotherapy or radiation and assist in determining your ability to give birth after treatment has occurred.

Before you start cancer treatment, it is important to talk to your doctor or nurse about any concerns regarding possibly having a baby later on. Many reproductive-age men and women in the United States successfully undergo cancer treatment. Your age, chemotherapy, doses received and cancer location are a few things that must be considered. Radiation to the ovaries or testicles and chemotherapy with agents such as cyclophosphamide/bulsulfan, meclorethamine, chorambucil, melphalan, procarbazine and cisplatin have the greatest impact on fertility potential. Other treatment regimens may also lower the chance of pregnancy. However, several options are available for men and women who wish to preserve or enhance their reproductive potential.

TAB THREE | UNDERSTANDING CANCER 47 patient guide What questions should I ask my doctor before treatment? This is not a complete list of questions, but it should give you a good starting point as you begin talking with your doctor or nurse (for both men and women):

• Will this treatment have any short- or long-term effect on my reproductive system? If so, what kind of effect and how long will it last?

• Can anything be done to prevent infertility before I start cancer treatment?

• Will any of the options to preserve my fertility interfere with my cancer treatment?

• If I become infertile, what are my options for having a family, such as adoption, using a donor egg or sperm, or having a woman carry a pregnancy for me?

• Can you refer me to a fertility specialist (before treatment, if possible)?

• Once I finish treatment, how will I know if I am fertile or infertile?

• How long should I wait after cancer treatment to try becoming pregnant?

• Is my infertility likely to be short-term or permanent?

Women may also want to ask: Can cancer treatment damage my ovaries so that I lose some or all of my eggs, or go into early menopause? Is my cancer treatment likely to damage my uterus, heart or lungs in such a way that I may have trouble carrying a pregnancy?

Preserving Fertility It is important for cancer patients to know that the two standard practices that are widely available for fertility preservation are sperm freezing and embryo freezing (cryopreservation). Other methods to preserve fertility are considered investigational (unproven) and should be done only in centers with substantial expertise and experience.

Preserving Fertility in Women Before Cancer Treatment IVF and Embryo Freezing - Embryo freezing, or embryo cryopreservation, is the most common and successful method of preserving fertility today. Mature eggs are removed from the woman’s ovaries and fertilized in the lab. This is called in vitro fertilization (IVF). The embryos are then frozen for future use after cancer treatment. This option works well for women who already have a partner, though single women can still have in vitro fertilization using donor sperm.

Preserving Fertility in Men Before Cancer Treatment Sperm Banking - Sperm banking is an effective way for men who have gone through puberty to store sperm for future use. Many men can store sperm even if they have reduced sperm quality or quantity. This option can also work for boys as young as 12 or 13, as long as they have gone through puberty.

TAB THREE | UNDERSTANDING CANCER 48 patient guide In sperm banking, a man provides one or more samples of his semen. This is usually done in a private collection room at a sperm bank facility or hospital. The man ejaculates (has a climax) through masturbation or with the help of a partner. The semen is collected in a sterile cup. If a man is staying close to a sperm bank or lab, he can collect a sample and bring it in quickly, usually within an hour, keeping it at room temperature during that time. Once a sample is given, it is tested, then frozen and stored.

Fertility After Cancer Treatments Many women and men are able to try to get pregnant after chemotherapy or radiation. Our reproductive experts will work with your oncologists to determine if you are able to get pregnant and offer other options. For males, it may take a few years for the production of sperm to return to normal. A semen analysis is used to determine the potential for pregnancy. If sperm counts are low, in vitro fertilization (IVF) may be required. In some cases, consultation with our male-fertility specialists and retrieval of sperm directly from the testicle will be required. Treatment with donor sperm is also available.

After clearance from the oncologist, a woman’s fertility potential may be determined with a blood test and ultrasound of the ovaries. The full range of reproductive options and adoption will be reviewed by our fertility team.

For more information:

• Talk with your physician

• Contact the UAB Reproductive Endocrinology and Infertility Clinic at 205-801-7623 or 1-800-282-1847 or go to the clinic website at www.uabmedicine.org/fertilitypreservation

• Reference: www.cancer.org (American Cancer Society)

TAB THREE | UNDERSTANDING CANCER 49 patient guide TAB FOUR TAKING CARE OF YOURSELF

Common Side Effects Nutrition for Cancer Patients The Emotional Impact of a Cancer Diagnosis Coping with Your Emotions Anxiety, Fear and Depression Panic Attacks Helping a Loved One Cope Talking to Your Children About Cancer Cancer, Sex and Sexuality TAKING CARE OF YOURSELF COMMON SIDE EFFECTS OF CANCER TREATMENT What causes the side effects from chemotherapy treatments? Because cancer cells grow and divide more rapidly than normal cells, many chemotherapy drugs are made to kill growing cells. But certain normal, healthy cells also grow quickly and chemotherapy can affect these cells, causing side effects. The fast-growing normal cells most likely to be affected are blood cells formed in the bone marrow and cells in the digestive system (mouth, stomach, intestines, esophagus), reproductive system (sex organs) and the hair. Some chemotherapy drugs may affect the cells in the heart, kidney, bladder, lungs and nervous system.

You may have none of these side effects or just a few. The kind of side effects you have and how bad they are depends on the type and dose of chemotherapy you get and how your body reacts. Your doctor or nurse will talk about the side effects you may have with the drugs you will be taking.

How long will the side effects last? Normal cells usually recover when chemotherapy is over, so most side effects gradually go away after treatment ends, and the healthy cells have a chance to grow normally. The time it takes to recover from side effects depends on many things, including your overall health and the kind of chemotherapy you have been taking.

New therapies have been developed to help control the side effects of chemotherapy. Some of the newer medications used to treat cancer do not cause as much harm to normal cells. Sometimes people receiving chemotherapy become discouraged about the side effects they may be having. If that happens to you, talk with your doctor or the nursing staff. They may be able to suggest ways to make the side effects easier to deal with or reduce them.

Coping with side effects from radiation therapy The side effects from radiation therapy vary from patient to patient. You may have no side effects or only a few mild ones through your course of treatment. However, some people do have serious side effects from treatment, depending mostly on the radiation dose and the part of your body treated. Your general health also can affect how your body reacts to radiation therapy and whether you have side effects. Before beginning treatment, your doctor or nurse will talk with you about the side effects you might experience and ways to treat them. Like side effects from chemotherapy, most side effects from radiation will go away a few weeks after the completion of treatment. If you begin to have side effects, please talk with your nurse or doctor as they will have ways to help you deal with them.

Common side effects and tips for treating them Fatigue Fatigue - feeling tired and lacking energy - is the most common symptom reported by cancer patients. The exact cause is not known; it can be due to many things. Fatigue from cancer is different from fatigue of everyday life in that it can appear suddenly. Not everyone feels the same kind of fatigue. It can last days, weeks or months but will gradually go away as the tumor responds to treatment.

TAB FOUR | TAKING CARE OF YOURSELF 51 patient guide Tips for coping with fatigue:

• Plan your day so that you have time to rest.

• Take short naps or breaks instead of one long rest period.

• Save your energy for important things.

• Take short walks or do light exercise if possible.

• Try complementary therapies such as meditation, prayer, yoga, etc.

• Eat as well as you can and drink plenty of fluids.

• Join a support group.

• Allow others to do some things for you.

Nausea and Vomiting Many patients fear that they will have nausea and vomiting while receiving cancer treatments, especially chemotherapy. But new drugs have made this side effect far less common and, when it does occur, not as bad. There are many drugs that can help with nausea and vomiting. It may take more than one drug to help or the doctor may have to try different drugs until you find one that works for you. Talk with your doctor or nurse about your nausea so that they can find the right drug or combination of drugs that work. Also, let them know if you have vomited for more than one day, or if vomiting is so bad that you cannot keep liquids down.

Tips for coping with nausea and vomiting:

• Eat and drink slowly. • Eat small meals throughout the day instead of two or three large meals. • If nausea is a problem in the morning, try eating dry foods like crackers or toast before getting up. • Drink cool, clear, unsweetened fruit juices, such as apple or grape juice, or light- colored sodas such as ginger ale or Sprite that have lost their fizz (are flat) and have no caffeine. • Avoid sweet, fried or fatty foods. • Wear loose-fitting clothing. • Breathe deeply and slowly when you feel nauseated. • Suck on mints or tart candies (do not use tart candies if you have mouth sores). • Try to avoid odors that bother you such as cooking smells, smoke or perfume.

TAB FOUR | TAKING CARE OF YOURSELF 52 patient guide Pain Many people think of pain when they think of cancer. Sometimes the cancer itself can cause pain, while other times the treatment itself can cause pain. However, not all patients experience pain with cancer or its treatments. No matter what causes pain, it can be controlled and relieved. There are many medications to treat pain and many work in different ways. Because of this, it is important that you tell your doctor or nurse about your pain. The more details you can give them, the easier it is for them to get you on the right pain medications. Sometimes, though, the doctor may have to try different drugs until you find one that works.

Things about pain that you need to tell your doctor or nurse:

• Where you feel the pain (all places)

• What it feels like – is it sharp, dull, throbbing, stabbing, steady, shooting, etc.

• How strong the pain feels

• How long it lasts

• What eases the pain and makes it better

• What makes the pain worse

• What medications you are taking for the pain and how much relief they provide

It helps to keep a daily diary of your pain, keeping the questions above in mind. Also, your doctor or nurse may ask you to rate your pain on a scale from 0 to 10. If you have no pain, use 0. As the numbers get higher, they stand for pain that is getting worse. A 10 means that the pain is as bad as it can be. Use the same pain scale range every time. The goal of pain control is to prevent the pain that can be prevented and treat the pain that can’t.

Tips for coping with pain:

• Do not wait until the pain is very bad to take your medication; take the pain medication when you start to hurt.

• Do not skip doses of your scheduled pain medication. If you wait to take pain medicine until you feel pain, it is harder to control.

• Try using relaxation exercises or something to distract you such as listening to music, watching TV/movies, talking with friends or reading a book.

• Do not be afraid to talk with your doctor or nurse about pain; they are here to help you cope with all the parts of cancer and its treatment.

TAB FOUR | TAKING CARE OF YOURSELF 53 patient guide Diarrhea When chemotherapy or radiation therapy affects the cells lining the intestines, it can cause diarrhea (watery or loose stools). If you have more than six to eight loose stools in a 24-hour period or if you have diarrhea that continues for more than 24 hours or if you have cramping and pain along with diarrhea, then you need to call your doctor or nurse. Your doctor may tell you to take an over-the-counter medication called Immodium or Lomotil. In severe cases, the doctor may prescribe medication to help with the diarrhea. Do not take any medication for diarrhea until told by your doctor or nurse.

Excessive diarrhea can cause your body to lose too much salt, water and other nutrients. If you continue to have diarrhea, you may need IV fluids to replace the water and nutrients that you have lost. Usually, the IV fluids can be given in the outpatient clinic and do not require hospitalization.

Tips for coping with diarrhea:

• Drink plenty of fluids, especially clear liquids such as mild juices, Kool- Aid, ginger ale, sports drinks or clear broth.

• Eat small amounts of food throughout the day instead of three large meals.

• Eat low-fiber foods such as white bread, white rice, noodles, creamed cereals, bananas, eggs, potatoes, or canned or cooked fruit without the skins.

• Avoid high-fiber foods such as whole grain breads and pastas, raw vegetables, beans, nuts, seeds, and fresh or dried fruit.

• Avoid very hot or very cold liquids, as this can make diarrhea worse.

• Avoid coffee, tea with caffeine, alcohol and sweets.

• Avoid fried, greasy or highly spiced foods.

• Avoid milk and milk products including ice cream.

Constipation Chemotherapy, pain medications or other medications can usually cause constipation (lack of a bowel movement). Constipation can also occur if you are less active than normal or if you are not drinking enough fluids or eating enough fiber. If you have not had a bowel movement in more than a day or two, or your normal routine for a bowel movement is abnormal, call your doctor or nurse. They may tell you to take an over-the- counter laxative or stool softener. Please do not take any medication without first talking to your doctor or nurse.

TAB FOUR | TAKING CARE OF YOURSELF 54 patient guide Tips for coping with constipation:

• Drink plenty of fluids, especially water.

• Talk with your doctor or nurse about increasing the fiber in your diet.

• Increase your exercise, take a walk or begin an approved exercise program.

Sore Mouth and Throat Dryness, irritation and sores are common with cancer treatment. Some cancer treatments can cause sores in the mouth and throat called stomatitis or mucositis. Because of this, it is extremely important to take good care of your mouth. In addition to being painful, mouth sores can become infected by the many germs that live in the mouth. Every step should be taken to prevent infections, because they can be hard to fight during chemotherapy and can lead to serious problems.

Tips for keeping your mouth and throat clean and healthy:

• Look in your mouth every day. Look at your teeth, tongue, gums and cheeks. Look under your tongue and the roof of your mouth. Look for red, white or broken spots.

• Brush your teeth and gums after every meal and at bedtime. Use a soft toothbrush and a gentle touch.

• Keep your mouth clean by rinsing with warm salt water. DO NOT use mouthwashes with alcohol in them (Scope, Listerine, etc.).

• Keep lips moist by using Vaseline, A & D ointment, chap stick or any other lip balm.

Sometimes, even though you may follow all of the tips above, sores still develop. If you get sores in your mouth or throat, or you become unable to eat due to pain, tell your doctor or nurse. There are medications and solutions that will help your mouth and throat heal.

Tips for coping with mouth or throat sores:

• Continue to keep your mouth clean, using mouthwashes given to you by the doctor or nurse. You can also use a salt/baking soda rinse. Add ½ tsp salt and ½ tsp baking soda to 1 quart of warm water. Place in a clean jug/bottle and use the solution throughout the day to rinse your mouth out. Make a new solution every day.

• Keep your mouth moist by sipping on water.

• Eat foods that are cool or at room temperature.

• Eat soft, bland foods such as ice cream, milkshakes, baby food, soft fruits, mashed potatoes, cooked cereals, macaroni and cheese, Jell-o, custards, etc. You can also

TAB FOUR | TAKING CARE OF YOURSELF 55 patient guide put cooked foods in the blender to make them smooth and easier to eat.

• Avoid irritating, acidic foods and juices, such as tomato and citrus (orange, grapefruit and lemon), spicy or salty foods, and rough or course foods such as raw vegetables, granola, popcorn and toast.

• Avoid alcohol and tobacco products.

• Leave your dentures out if necessary, especially if they do not fit well.

Hair Loss Hair loss, also known as alopecia, is a common side effect from cancer treatments. Most people think that chemotherapy will cause them to lose their hair, but that is not true. Not all chemotherapy drugs cause hair loss. Your doctor or nurse will tell you if you are taking medications that will cause hair loss. Hair loss may not happen right away. It may begin several weeks after your first treatment or after a few treatments. It can occur on all parts of the body, not just the head. When hair loss does occur, the hair may become thinner, fall out in clumps or fall out completely.

Hair grows back after the treatments are over. Sometimes hair will even start to grow back before you finish your treatments. Also, hair may grow back a different color or texture than the previous hair. Many times people will say that their hair and head becomes sensitive before losing hair.

The following are tips for helping care for your hair and head during treatment.

• Use a mild shampoo.

• Do not wash your hair every day. Instead, try every second or third day.

• Use a soft hair brush.

• Use low heat when drying your hair.

• Do not curl or use rollers or harsh styling products on your hair.

• Avoid dying, perming or relaxing your hair during treatment and for at least several months following hair re-growth.

Anger, depression and sadness are common feelings when you have lost your hair or when it has become very thin. It is okay to feel these things, but remember that it is only a temporary side effect and the hair will grow back after you finish treatments. Talking with someone about your feelings can help.

Tips for coping with thin hair or hair loss:

• Wigs: There are many places that can help you choose a wig style and color that is right for you. Some of the local wig shops are owned by people who have either had cancer or have had a family member be diagnosed with the disease.

• Hats or scarves: Again, many of the wig shops also sell hats and scarves. In addition, the American Cancer Society has a catalog called “TLC” which sells all varieties of hats, turbans and scarves. Please check with your nurse or call 1-800-850-9445 to get a free catalog. You can also visit the website at www.tlccatalog.org

TAB FOUR | TAKING CARE OF YOURSELF 56 patient guide • Have your hair cut short. A shorter style will make your hair look thicker and fuller. It also will make your hair easier to manage.

• Use sunscreen, sun block or a hat to protect your scalp when you are outside.

• If having your hair fall out a little at a time is too emotional for you, consider just shaving your head. That way you do not have to deal with hair being everywhere and all over everything. Consider having a “party” to shave your head.

• The American Cancer Society is a great resource for information and support. They also have a small supply of turbans and wigs (limited variety) that you can get for free. Call your local ACS for more information or log onto their Web site at www.cancer.org.

Finally, ACS has a program called “Look Good, Feel Better.” It is aimed towards female cancer patients and focuses on ways to make your self feel good during cancer treatment. Trained beauticians and hair stylists teach you how to style your wig or your remaining hair. You will also get a bag of free make-up samples that the teachers will show you how to use to enhance your facial features. They will even teach you how to draw on eyebrows if you have lost yours. You must register for this class so please call your local ACS for details or call 1-800-395-LOOK or log on at www.lookgoodfeelbetter.org

Neutropenia (low white blood cell count) Neutropenia is a potentially serious side effect from cancer treatment. It happens when the bone marrow is not working properly and cannot make white blood cells. White blood cells (WBCs) are the cells that fight infections. If you do not have enough WBCs to fight off an infection, then you can become extremely sick. Your doctor and nurse will check your WBC count often while you are getting treatment. They will also tell you when it is most likely that your cell count will be low. It is extremely important that you follow certain precautions at that time to help you stay well.

Tips for preventing infection and precautions:

• Wash your hands! Have others wash their hands. Be sure to wash before you eat, after you use a restroom and after touching animals.

• Stay away from people who are sick including people with colds, flu, measles, chicken pox, sinus infections, etc. Try to avoid crowds.

• Go out at times when shops, stores, restaurants or movies are less likely to be busy. If you attend church, arrive late and leave early. Sit in the back.

• Stay away from children who have recently had shots which contain a “live virus,” such as chicken pox or oral polio vaccine.

• Clean your bottom very carefully and gently after each bowel movement. Use a squirt bottle with warm water to clean your bottom and then gently pat dry. Talk with your doctor or nurse if you develop hemorrhoids.

• Keep your mouth clean; follow the tips in the section on mouth care.

TAB FOUR | TAKING CARE OF YOURSELF 57 patient guide • Be careful not to cut or tear your skin or nails.

• Use an electric shaver instead of a razor.

• Do not squeeze or scratch pimples or bumps.

• Avoid contact with animal waste such as bird cages, litter boxes or fish tanks.

• Avoid standing water, plants, flower vases, birdbaths or humidifiers.

• Do not have fresh cut flowers or live plants in the house/hospital room.

• Do not eat raw fish, seafood, meat, eggs, vegetables or fresh fruit.

• Avoid oral and sexual activity during the time when your counts are low.

Most infections come from germs that are normally found on your skin and in your body. Sometimes the cause of an infection is not known. Even if you take extra care, you may still get an infection. If you have any of the following signs, call your doctor or nurse right away!

Call your doctor or nurse if you have:

• A fever of 100.5 or greater

• Chills, especially shaking chills

• Sweating

• Loose bowel movements

• Frequent urgency to urinate or a burning feeling when you do

• A bad cough or sore throat

• Unusual vaginal discharge or itching

• Redness, swelling, drainage or tenderness around a wound, sore, ostomy, pimple, rectal area or catheter site

• Sinus pain or pressure

• Earaches, headaches or stiff neck

• Blisters on the lips or skin

• Mouth sores

TAB FOUR | TAKING CARE OF YOURSELF 58 patient guide Thrombocytopenia (low platelet count) Thrombocytopenia means low platelet counts. Platelets are blood cells that help stop bleeding by making your blood clot. When you have a low platelet count you may bleed or bruise more easily. Certain types of cancer treatments such as some chemotherapy drugs cause low platelets. Your doctor or nurse will be checking your platelet levels during your treatments. It is very important for you to follow certain precautions when your platelet count is low to decrease the chance of problems or injury.

Tips for preventing problems/Precautions to watch when your platelets are low:

• Use a soft toothbrush to clean your teeth.

• Use an electric shaver instead of a razor.

• Do not take aspirin or drugs with aspirin in them.

• When cleaning your nose, blow gently into a tissue.

• Eat a soft, bland diet, avoiding food with sharp edges.

• Avoid alcohol.

• Be careful not to cut yourself when doing chores, cooking or working in the yard.

• Ask your doctor if it is okay for you to be sexually active.

• Avoid contact sports with a risk of injury.

• Be aware of your surroundings and try not to bump into things.

• Watch your urine and stool for signs of bleeding or blood.

Low platelets can not only cause you to bleed and bruise easier, they can also cause petechia, which are small, red spots under the skin and a sign that you have a low platelet count. They usually appear on the chest or back but can be seen on the arms and legs. A low platelet count can be potentially dangerous if it gets too low. That is why it is important for you to know when to call the doctor or nurse.

Call your doctor or nurse if you have:

• Reddish or pinkish urine

• Black or bloody stools

• Bleeding from your nose or mouth

• Small, red spots under your skin

• Unexpected bruising

• Headaches or changes in vision

• A warm to hot feeling in an arm or leg

TAB FOUR | TAKING CARE OF YOURSELF 59 patient guide Nutrition for Cancer Patients Good nutrition is important for people undergoing cancer treatment as well as for those living with advanced cancer. Eating well can help you:

• Feel better • Keep up your strength and energy • Tolerate treatment-related side effects • Lower your risk of infection • Heal and recover quickly from treatment

Eating well means eating a variety of foods that will give you the nutrients you need. These nutrients include protein, carbohydrates, fat, water, vitamins and minerals.

Protein Protein is important to help your body heal from surgery or treatment. It also helps keep the immune system strong to fight infections. Good sources of protein are lean meats, poultry, fish, dried beans, nuts and dairy products.

Carbohydrates Carbohydrates give your body energy. Whole grains such as whole grain breads, brown rice, whole wheat pastas and whole grain cereals also provide fiber which helps maintain bowel function. Other good sources of carbohydrates are fruits such as apples, bananas and berries. Sweets such as candy and desserts also supply carbohydrates, but very little nutrients.

Fat Fats also supply energy to the body and are important for the functioning of certain vitamins. Fats also enhance the flavor of foods. Unsaturated fats are healthier for your body. Examples of unsaturated fats include olive oil, canola, nut and vegetable oils.

Water Water is essential for the body to function well. Dehydration can also lead to fatigue so make sure you are getting plenty of fluids. In general, aim for about eight 8-ounce glasses of water or liquid each day.

Vitamins and Minerals Vitamins and minerals help your body use the energy you get from food. Eating a variety of foods can help you make sure that you are getting the vitamins and minerals your body needs. If you are concerned you are not getting enough vitamins or minerals, ask your doctor or dietitian if a supplement may be helpful. Large doses of some vitamins and minerals may reduce the effectiveness of chemotherapy and radiation therapy. During treatment, it may be best to choose one with no more than the Daily Value (DV) for all nutrients unless indicated by your physician.

TAB FOUR | TAKING CARE OF YOURSELF 60 patient guide Supplements Many people with cancer are interested in taking supplements (selected vitamins, minerals, herbs, etc.). Talk with your doctor and dietitian about the potential risks and benefits before starting a supplement. Some supplements can change the way your body reacts to chemotherapy and/or radiation therapy. Also, dietary supplements are not classified as drugs so they do not undergo the same safety and effectiveness requirements as medications.

Sometimes the cancer itself or the treatment may cause side effects that affect your eating. The following are suggestions on how to maintain a healthy intake while dealing with those side effects. Talk to your doctor or dietitian if these symptoms persist.

THE EMOTIONAL IMPACT OF A CANCER DIAGNOSIS© When you are told you have cancer, the diagnosis affects not only you, but also your family and friends. You may feel scared, uncertain or angry about the unwanted changes cancer will bring to your life and theirs. You may feel numb or confused. You may have trouble listening to, understanding or remembering what people tell you during this time. This is especially true when your doctor first tells you that you have cancer. It is not uncommon for people to shut down mentally once they hear the word “cancer.”

There is nothing fair about cancer, and no one “deserves” to have it. A cancer diagnosis is hard to take and having cancer is not easy. When you find out you have cancer, your personal beliefs and experiences help you figure out what the diagnosis means to you and how you will handle it. As you face your own mortality and cope with the many demands of cancer, you may look more closely at your religious beliefs, your personal and family values, and what’s most important in your life. Accepting the diagnosis and figuring out how cancer fits into your life can be challenging.

TAB FOUR | TAKING CARE OF YOURSELF 61 patient guide After you are diagnosed with cancer, you may feel shock, disbelief, fear, anxiety, guilt, sadness, grief, depression and anger. Each person may have some or all of these feelings, and each will handle them in a different way. Your first emotion may be shock, because no one is ever ready to hear they have cancer. It is normal for people with cancer to wonder why it happened to them or to think life has treated them unfairly. You may not even believe the diagnosis, especially if you don’t feel sick.

You may be afraid. While some people fear cancer itself, others may be afraid of cancer treatments and wonder how they will get through them. Fear of pain and suffering is one of the greatest fears people with cancer and their loved ones have. You may feel guilty. You may ask yourself if you could have noticed your symptoms earlier, or wonder what you’ve done that may have caused the cancer. You may wonder if you were exposed to something at home or work that led to cancer. Or you may worry that other members of your family will also get cancer.

At this time we do not know what causes most cancers. But a few are known to be hereditary, or passed from a parent to a child. This means if one family member develops it, others in the family may have a higher risk of developing it, too. This can cause even more concerns for the person newly diagnosed with cancer.

You may feel hopeless or sad if you see cancer as a roadblock to a life full of health and happiness. It is hard to feel positive and upbeat, especially if the future is uncertain. Just thinking about treatment and the time it will take out of your life can seem like too much to handle. Feelings of sadness or uncertainty can be made worse by your experiences with cancer.

You may have a sense of loss linked to your cancer diagnosis and treatment. Cancer can change your sense of self - that is, how you think of your body, yourself and your future. Grief is a normal response as you give up your old ideas of yourself and begin to develop ways to cope with the new, unwanted changes in your life. It may take time for you to become aware of these losses and changes. It can help if you share your grief with someone close to you. If there is no one near you that you want to confide in, you might want to see a mental health professional. Your feelings need care too, just like your physical body.

You might feel angry. While some people may not outwardly express their anger and frustration, others may direct their anger toward family members, friends or health care professionals. This is usually not done on purpose. If you are only trying to vent your feelings, let people know that you are not angry with them and know it is not their fault. Also let them know that you don’t expect them to solve your problems -- you just need them to listen.

TAB FOUR | TAKING CARE OF YOURSELF 62 patient guide Coping with Your Emotions Some people believe it is easier to face the reality of a new or scary situation if they learn as much as they can about it. This is especially true when you are dealing with a complex group of diseases like cancer. There is often a great fear of the unknown and uncertainty about what is going to happen. Knowledge can help lessen that fear by helping you learn more about the type of cancer you have, its treatment and your chances for recovery.

Be your own advocate. Even though people facing cancer cannot change their diagnosis, they can seek out reliable, up-to-date information and talk to family members, friends and their health care team about their situation. Finding good sources of support can help people with cancer take control and make informed decisions. It’s important to work through your feelings about cancer, because how you feel can affect how you look at yourself, how you view life and what decisions you make about treatment.

These tips can help you make your medical appointments as useful as possible:

• Make a list of questions to ask your health care team.

• Bring a family member or friend along to appointments. They can serve as an extra pair of ears, helping you remember things later and providing support.

• Ask if you can record important conversations.

• Take notes. If someone uses a word you don’t know, ask them to spell it and explain it.

• Ask your health care team to explain anything you don’t understand.

Other things you can do to deal with your emotions: Ask for support from family, friends and others. Just having someone who cares and will listen to you can be helpful. If friends or family members are not able to be supportive, find others who will be. Health care professionals (such as social workers, psychologists or other licensed health professionals) and support groups can be extra sources of support.

• Get spiritual support through prayer, meditation or other practices that help you feel more at peace. You may want the guidance of a chaplain, pastor, rabbi or other religious leader.

• Pay attention to your physical needs for rest, nutrition and other self-care measures.

• Find ways to express your feelings, such as talking or writing in a journal.

• Allow yourself private time and space.

TAB FOUR | TAKING CARE OF YOURSELF 63 patient guide • Walk or exercise. It is a good idea to talk with your cancer care team about your needs before starting a new exercise program or activity.

• You will not be able to change many things in your life. Focus on what you can change to gain a greater sense of control over your situation.

• One cancer survivor says that: “Daily walks and, later, running helped me keep my sanity after I was diagnosed.”

• Find out what helped other patients and families cope with cancer and/or talk with other people diagnosed with the same type of cancer.

• Make changes at home to create a healthier environment and/or talk with your doctor about making healthy lifestyle choices.

Feeling sad all the time, having trouble sleeping or thinking about suicide are signs that you need professional help. Other symptoms that may need treatment include feelings of panic, intense anxiety or constant crying. If you think you might need professional help, talk with your doctor.

Last Medical Review: 06/24/2008 Last Revised: 06/24/2008 ©Reprinted by the permission of the American Cancer Society, Inc. www.cancer.org. All rights reserved

TAB FOUR | TAKING CARE OF YOURSELF 64 patient guide Anxiety, Fear and Depression© Most patients, families and caregivers face some degree of depression, anxiety and fear when cancer becomes part of their lives. These feelings are normal responses to such a life-changing experience. In people with cancer, these feelings may be caused by many things, including changes in how they are able to fill family or work roles, the loss of control over life events, body image changes, fear of death, fear of suffering and pain, or fear of the unknown. Family members may have these feelings because they are afraid of losing their loved one. They may also feel angry because someone they love has cancer, frustrated that they cannot “do enough,” or stressed because they have to do more at home.

It’s important to remember that people can feel distress at any time after cancer diagnosis and treatment, even many years after the cancer is treated. As their health situations change, people with cancer must cope with new stressors along with the old, and their feelings often change, too. For instance, people with advanced cancer may have more emotional distress than those with earlier-stage cancers.

People who have physical symptoms such as pain, nausea or extreme tiredness (fatigue) also seem more likely to have emotional distress. Most of the time, these physical symptoms can be controlled with medicines -- but it may take more than one try to find the right drug or combination of drugs. This is one reason to stay in touch with your cancer care team, so that they can help you with these symptoms before you feel overwhelmed.

The information we talk about here will help families, friends and caregivers know what feelings and behaviors they may expect from their loved one who has been diagnosed with cancer. It will also help you understand what is not normal and when outside help may be needed.

Depression It is normal to grieve over the changes that cancer brings to a person’s life. The future, which may have seemed so sure before, now becomes uncertain. Some dreams and plans may be lost forever. But if you are caring for a person who has been sad for a long time or is having trouble carrying out day-to-day activities, that person may have clinical depression. In fact, up to one in four people with cancer do have clinical depression. Clinical depression causes great distress, impairs functioning and may even make the person with cancer less able to follow their treatment plan. The good news, however, is that clinical depression can be treated.

If you are caring for someone who has symptoms of clinical depression, encourage him or her to get help. There are many treatments for clinical depression including medicines, counseling or a combination of both. Treatments can reduce suffering and improve your loved one’s quality of life.

Keep in mind that caregivers and family members can also become depressed. If you suspect you may be depressed, see a doctor. Make time to get the help and support you need. If you notice symptoms in another friend or family member, try to get them help.

TAB FOUR | TAKING CARE OF YOURSELF 65 patient guide Symptoms of clinical depression are:

• Ongoing sad or “empty” mood for most of the day

• Loss of interest or pleasure in almost all activities most of the time

• Major weight loss (when not dieting) or weight gain

• Being “slowed down” or restless and agitated almost every day, enough for others to notice

• Extreme tiredness (fatigue) or loss of energy

• Trouble sleeping with early waking, sleeping too much or not being able to sleep

• Trouble focusing thoughts, remembering or making decisions

• Feeling guilty, worthless or helpless

• Frequent thoughts of death or suicide (not just fear of death), suicide plans or attempts

Keep in mind that some of these symptoms, such as weight changes, fatigue or even forgetfulness can be caused by cancer treatment. But if five or more of these symptoms happen nearly every day for two weeks or more, or are severe enough to interfere with normal activities, encourage the person you are caring for to be checked for clinical depression by a qualified health or mental health professional. If your loved one tries to hurt him- or herself, or has a plan to do so, get help right away.

What to do:

• Encourage the depressed person to continue treatment until symptoms improve, or to talk to the doctor about different treatment if there is no improvement after two or three weeks.

• Promote physical activity, especially mild exercise such as daily walks.

• Help make appointments for mental health treatment, if needed.

• Provide transportation for treatment, if needed.

• Engage your loved one in conversation and other activities they enjoy.

• Realize that negative thinking is one of the symptoms of depression and should get better with treatment.

• Reassure your loved one that with time and treatment, he or she will begin to feel better.

TAB FOUR | TAKING CARE OF YOURSELF 66 patient guide Anxiety and Fear At many different times during their treatment and recovery, people with cancer may be fearful and anxious. For most people with cancer, finding out that they have cancer or that the cancer has come back causes the most anxiety and fear. Fear of treatment, doctor visits and tests may also cause apprehension (the feeling that something bad is going to happen), which is completely normal. People may be afraid of controlled pain, dying or what happens after death, including what may happen to loved ones.

Symptoms of anxiety and fear are:

• Anxious facial expression

• Uncontrolled worry

• Trouble solving problems and focusing thoughts

• Muscle tension (looks tense or uptight)

• Trembling, shaking and other signs of restlessness

• Dry mouth

• Angry outbursts

• Irritability (grouchy or short-tempered)

If a person has these symptoms, and they are interfering with her or his life, a mental health evaluation may be helpful. Keep in mind that sometimes, despite having all the symptoms, a person may deny having these feelings. But if they are willing to admit that they feel distressed or uncomfortable, therapy can often help.

What to do:

• Encourage, but do not force, each other to talk.

• Share feelings and fears that you or your loved one may be having.

• Listen carefully to each other’s feelings. Offer support, but don’t deny or discount feelings.

• Remember that it is okay to feel sad and frustrated.

• Get help through counseling and/or support groups.

• Use prayer or other types of spiritual support if it helps.

• Try deep breathing and relaxation exercises. Close your eyes, breathe deeply, focus on each body part and relax it, starting with your toes and working up to your head. When relaxed try to think of a pleasant place such as a beach in the morning or a sunny field on a spring day.

• Talk with a doctor about using anti-anxiety or anti-depressant medicines.

TAB FOUR | TAKING CARE OF YOURSELF 67 patient guide What not to do:

• Keep feelings inside.

• Force someone to talk if they are not ready to.

• Tell a person to cheer up if they seem depressed.

• Blame yourself or another person for feeling fearful, anxious or depressed.

• Try to reason with a person whose fears, anxieties or depression are severe; talk with the doctor about medicines and other kinds of help.

Last Medical Review: 06/24/2008 Last Revised: 06/24/2008 ©Reprinted by the permission of the American Cancer Society, Inc. www.cancer.org. All rights reserved

68 patient guide TAB FOUR | TAKING CARE OF YOURSELF Panic Attacks Panic attacks can be an alarming symptom of anxiety. Panic attacks happen very suddenly and often reach their worst within about 10 minutes. The person may seem fine between attacks, but is usually afraid that they will happen again.

Symptoms of a panic attack include:

• Shortness of breath*

• Racing heart*

• Feeling dizzy, unsteady, lightheaded or faint*

• Chest pain or discomfort*

• Feeling as if they’re choking*

• Trembling or shaking

• Sweating

• Fear of losing control or “going crazy”

• Urge to escape

• Numbness or tingling sensations

• Feeling “unreal” or “detached” from themselves

• Chills (shaking or shivering) or hot flashes (may involve sweating or facial reddening)

*If a person is having any of the first five symptoms, it can mean an urgent or life-threatening condition. Call 911 or the doctor right away if the patient unexpectedly has any of these symptoms, which can be signs of other, more serious problems such as allergic reaction, heart attack, blood chemistry imbalance, collapsed lung or others. It is not safe to assume that they are panic-related until diagnosed by a doctor.

If the person has had panic attacks in the past, and it happens again exactly as it did before, they can often recognize it as a panic attack. If the person recovers completely within a few minutes and has no more symptoms, it is more likely to be a panic attack. If panic attacks are diagnosed, brief therapy and medicines have been shown to be helpful.

What to do:

• Check with the doctor to be sure that the symptoms are caused by panic and not another medical problem. • Stay calm and speak softly during a panic attack. • Sit with the person during panic attacks until he or she is feeling better.

TAB FOUR | TAKING CARE OF YOURSELF 69 patient guide • Call for help if needed. • After the panic attack is over, encourage the person to get treatment for the panic attacks. • Provide transportation to treatment if needed. The person may be afraid that a panic attack will happen while driving.

What not to do:

• Dismiss the person’s terror or fear.

• Judge the person for feeling scared and acting strangely. Try to talk the person out of their fear or other feelings.

• Hesitate to call the doctor if you have questions about what is happening.

Helping a Loved One Cope What if the person with cancer acts as if nothing is wrong? Be aware that your loved one may put up a false front, or a “happy face,” even if he or she doesn’t really feel that way. This may be their way to try to protect the people they love, and possibly themselves, from painful feelings. And some people believe that a person with cancer can improve their outcome by being cheerful and happy all the time.

Studies of coping styles and survival or recurrence show that being cheerful has little to no effect on cancer. But some people with cancer feel guilty for being sad or fearful, and may try to act happy and “be positive” even when it is painful to them. If you think that this is happening, gently tell the person that you are willing to listen to their feelings, no matter what they are. The message may be something like, “I care for you, and I am here for you whether you are happy, afraid, angry or sad.”

Support from loved ones and the cancer team can help. It may help to know that patients with more social support tend to feel less anxious and depressed and have a better quality of life. People with cancer find it encouraging to have others listen and help with the practical aspects of dealing with cancer. Asking family members and loved ones for this kind of support may help reduce your distress as well as theirs. Being able to talk with the cancer care team about medical fears, concerns about pain, and other issues may also help the patient feel more comfortable. You or someone who is close to the patient might offer to go with (or take) them to the doctor. Your being with them may have a calming effect, and you might be able to help the person remember symptoms or problems that need to be addressed.

The doctor and cancer care team can answer questions and talk about any concerns you or your loved one have. They can also refer your loved one to a mental health professional if needed.

TAB FOUR | TAKING CARE OF YOURSELF 70 patient guide When to call the doctor Going through a wide range of emotions is a normal part of coping with cancer. But some things should not be ignored.

Please call the doctor immediately if your loved one has any of the following symptoms:

• Thoughts of suicide (or of hurting him- or herself)

• Inability to eat or sleep

• Lacks interest in usual activities for many days

• Unable to find pleasure in anything

• Has emotions that interfere with daily activities and last more than a few days

• Is confused

• Has trouble breathing

• Is sweating more than usual

• Is very restless

• Has new or unusual symptoms that cause concern

There is no doubt that cancer changes people’s lives. The emotional stress it causes can be overwhelming, but no one has to manage it alone. Your loved one’s health care team may seem focused on his or her physical health, but they care about emotional health, too. Keep them involved in and aware of what your loved one is feeling and doing. Learn about and use the resources available to you. Coping with cancer is stressful, but you don’t have to do it alone.

Last Medical Review: 06/24/2008 Last Revised: 06/24/2008 ©Reprinted by the permission of the American Cancer Society, Inc. www.cancer.org. All rights reserved

TAB FOUR | TAKING CARE OF YOURSELF 71 patient guide Talking to Your Children About Cancer It is easy to communicate with our families when it is something good we are sharing. Even when it bad, it’s easier when it doesn’t impact us personally or there isn’t a high degree of uncertainty. It is a natural reaction to protect our loved ones, especially children, from anything painful in life and a cancer diagnosis will probably be the most difficult thing you and your family will ever face together. The keyword to remember here is “together.” Just like the times they needed you to help them face life’s challenges whether it was learning to walk, facing speed bumps in school, not getting picked on the sports team, or the first broken heart, you are going to need each other now. Now is the time to remind them how families love each other unconditionally, share emotions and face even the most difficult battle together.

No matter the age, experts and research have proven that it is best to be honest and upfront with children of all ages. This may prove to be the hardest decision you face as a parent and in your cancer journey. It is the journey that they will have to make with you, and there really is no way to protect them from having to do so. However, there are steps and ways to help them understand how their surroundings are changing and to let them know that you are in this together and can trust you to be truthful with them. Making a decision on how to communicate the diagnosis with your children will probably be the bravest decision you will ever make for them.

Understand that not telling them will help foster fear of the changes that are going to take place in their life and they may imagine something worse than cancer happening. They may hear about the diagnosis from someone other than you in a way that would be different than what you would wish for them to experience. If they are not included, they could feel left out and may not understand why everything is changing around them. This will place unnecessary strain on you and your family. Allowing them to be there for you now will show them you trust them to take this journey with you as a family.

As you start thinking about how to talk to your kids, know that there are many resources and healthy tips to help you with this task in your journey. You do not have to travel this road alone. There are books, counselors, support groups, and many other avenues to assist you, and we are here to help you find the resources you need.

It is important to recognize your child’s developmental age. Communication with small children is still very effective and necessary, but should be approached differently than a discussion with a teenager, for example. There are some common points that all age groups share and these can be carefully planned in advance which can help you achieve the healthy discussion you desire of this difficult topic.

The first thing to consider is how you are handling the diagnosis yourself. Children often learn how to handle stressful situations from their parents. You may need a few days to absorb the diagnosis yourself before sharing with them, which is perfectly acceptable. While it is best to not approach them while you are at your highest level of anxiety or most upset, it is also best not to expect to share little to no emotions together at all during this time. In other words, it is perfectly normal and helpful for you to cry when you tell them. Showing your feelings will enable them to know that it is acceptable for them to feel sad with you and this can be very

TAB FOUR | TAKING CARE OF YOURSELF 72 patient guide therapeutic for all of you. Allowing them to know you are upset about this can help them cope with their own feelings and know their feelings are normal.

Timing is also one of the most important aspects of any serious discussion a parent can have with their children. Planning the time you tell your children, whether or not you wish to have others present to assist when you tell them, and being mindful of the daily activities going on around all of you is important. While there may never seem to be the perfect time to share this type of information with them, choosing a time that will enable you to answer their questions afterward and share their emotions will be the best for them. All ages benefit from hearing that this diagnosis is not contagious and not caused from anything they did. Realizing that both of you may feel guilty is important. They may feel guilty that something they did may have caused you to be sick, and you may feel guilty that your sickness is causing them pain when in reality you are not to blame any more than they are. We do not choose cancer.

Small children from toddlers to preschool children will benefit most from direct small facts about your diagnosis. They will not need a lot of details, just reassurance that you are not feeling well because you have cancer. They usually benefit by simply letting them know that some things in their life may change, but you will work through this together and you love them very much. This age range also needs reassurance that there will always be someone to love and care for them. Trying to keep their schedules as normal as possible can also help. You will probably need to keep them informed and reminded occasionally of what you talked about and why some of their routines have to change for now, always following with reassurance of your love for them. This can be healthy for both of you to lean on each other.

School-aged children require more planning and thought. You may want to write down some important things you wish to say during your talk, but try not to stage too many words. Talking from your heart and following their input will be best. They may need to hear the news in different phases. They also may not react the way you planned. Keep in mind they have never had to face this kind of challenge in life, making it impossible for you to know exactly what they may say or how they may feel even though you know them best. Try not to be surprised or upset at their reaction. In the long run, you are providing them with reassurance of your love and that you trust them enough to be honest and truthful about what you will be facing together. They may have questions that you do not have answers for, which is normal. Allowing them to help you will prevent them from feeling helpless. For example, it could help to involve them in the questions you may write down to ask your health care provider, especially if you didn’t have an answer to a question they asked during your discussion.

Teenage children may need time to absorb. It may also help to ask them questions such as what they may have heard about cancer. You may be able to resolve some of their fears that may be from false information about the diagnosis. It is also helpful to remember that their reaction may also be delayed just as those of younger children. Revisiting the discussion at a later time could prove to be healthy and necessary.

TAB FOUR | TAKING CARE OF YOURSELF 73 patient guide If your child’s school has a counselor, it would be helpful to update them after speaking with your child so they will be able to assist your child during school time with any difficulties they may experience from this. Letting their teacher or school principal know may also be in their best interest. It may be best to ask them to keep it confidential but informing them of what your family is facing will help them understand the changes that may occur in your child while at school and keep you informed of them as well. Again, this is a journey that you will face together and school teachers, school counselors, mentors, your preferred spiritual support group, close friends and family, along with your love and support, can be the strongest ammunition to help your child cope with your diagnosis. You may want to gather a list of those who could help you support your children with this life change and have it on hand for those toughest times.

Remember, while it is true this is a painful time for you and those you love, getting through it together will only make each of you closer and stronger for the fight against cancer. Being truthful with your child about something as difficult as a cancer diagnosis continues to build the trusting relationship you have with your child. It is not possible to keep cancer a “secret,” and being honest and open throughout this process works on a lifelong foundation of trust.

Resources for children who have a loved one with cancer Cancer Really Sucks An internet-only resource designed for teenagers by teenagers who have loved ones facing cancer www.cancerreallysucks.org

Kids Konnected For children and teenagers who have a parent with cancer and for those who have lost a parent to cancer Toll-free number: 1-800-899-2866 (If you get voicemail, leave message to receive a return call within 24 hours.) www.kidskonnected.org

National Cancer Institute To learn more about cancer, or to get special information for teens; you can call to order a special booklet for teens whose parents have cancer or read it online at: www.cancer.gov/cancertopics/when-your-parent-has-cancer-guide-for-teens Toll-free: 1-800-422-6237 www.cancer.gov

TAB FOUR | TAKING CARE OF YOURSELF 74 patient guide Cancer, Sex and Sexuality© When you first learned you had cancer, you probably thought mostly of survival. But after awhile other questions may have started coming up. You may be thinking, “How ‘normal’ can my life be, even if the cancer is under control?” Or even “How will cancer affect my sex life?”

Sex and sexuality are important parts of everyday life. The difference between sex and sexuality is that sex is thought of as an activity -- something you do with a partner. Sexuality is more about the way you feel, and is linked to your need for caring, closeness and touch.

Feelings about sexuality affect our zest for living, our self-image and our relationships with others. Yet patients and doctors often do not talk about the effects of cancer treatment on their sex lives or how a person may feel as a sexual being. Why? A person may feel uneasy talking about sex with a professional like a doctor or even with a close sex partner. Many people feel awkward and embarrassed when talking about sex.

Here, we offer you and your partner some information about cancer, sex and sexuality. This information applies to all with cancer -- regardless of sexual orientation. We cannot answer every question, but we will try to provide enough information to help you and your partner have open, honest talks about your sex life. We will also share some ideas about talking with your doctor and your cancer care team. Lastly, we give you a list of other helpful sources of information in the “Additional Resources” section.

Keep in mind that sexual touching between you and your partner is always possible, no matter what kinds of cancer treatment you have had. This may surprise you, especially if you are feeling down or have not had sex for awhile, but it is true. The ability to feel pleasure from touching almost always remains.

The first step is to bring up the topic of your sex life with your doctor or another member of your health care team. You have a right to know how your treatment will affect nutrition, pain and your ability to return to work. You also have the right to know the facts about your sex life.

Here are some things to keep in mind during and after cancer treatment.

Learn as much as you can about how your cancer treatment can affect your sex life. The first thing to do is talk with the members of your health care team about your sex life. You already may have asked how your treatment will affect your going back to work, your eating or your pain. You have just as much right to know the facts about your sex life. When you know what to expect, you can plan how to handle any problems that come up.

No matter what kind of treatment they have, nearly everyone is still able to feel pleasure from touching. Few cancer treatments damage the nerves and muscles that help you feel pleasure from touch or having orgasm. You may have to change the way it happens, but you still should be able to feel pleasure and be satisfied. The few men whose cancer treatments affect the brain or spinal cord may lose the ability to feel pleasure from sex.

Try to keep an open mind about ways to feel sexual pleasure. Some couples have a narrow view of what is normal sex. If both partners cannot reach orgasm through sex as they’ve always done, they feel cheated. But during cancer treatment, there may be times when that kind of sex is not possible. Don’t give up just because your usual routine has been changed.

TAB FOUR | TAKING CARE OF YOURSELF 75 patient guide Try to have clear, two-way talks about sex with your partner. Keeping each other up to date with what is happening is key to a healthy sex life. Tell your partner what you learn from your doctor. If you feel weak or tired and want your partner to take a more active role in touching you, say so. If some part of your body is tender or sore, guide your partner’s touches to create the most pleasure and avoid pain. Keep in mind that if one person has a sex problem, it affects both of you. If you are dealing with sexual problems, it works best when your partner is part of the solution.

Boost your confidence. Remind yourself about your good qualities. If you lose your hair, help yourself to look and feel better by shaving your head. Or try different kinds of hats to find one you feel comfortable wearing, or wear nothing on your head if that works for you. Eating right and getting exercise can help keep your body strong and your spirits up. Don’t forget to take time to relax -- movies, hobbies, getting outdoors. Do what makes you feel good about yourself.

Last Medical Review: 06/24/2008 Last Revised: 06/24/2008 ©Reprinted by the permission of the American Cancer Society, Inc. www.cancer.org. All rights reserved

TAB FOUR | TAKING CARE OF YOURSELF 76 patient guide SUPPORTIVE CARE FOR YOU AND YOUR FAMILY A cancer diagnosis launches you on a journey that most people would rather never undertake. Cancer treatment can be brutal at times and the treatment and after-effects of the illness can change who you are as a person. At UAB, we are here to support you as a whole person through the challenges of treatment and into survivorship. Our goal is to help patients fulfill their maximum physical, emotional, spiritual, vocational and social potential.

Supportive Care and Survivorship at UAB is an integral part of your cancer care program. Our outpatient Supportive Care and Survivorship Clinic takes an interdisciplinary approach to caring for patients with cancer, whether in active treatment of completed treatment. Our doctors have expertise in complex symptom management including pain, depression, anxiety, insomnia, fatigue, nutritional issues and distress. Our team is made up of physicians, physician assistants, nurses, physical therapists, counselors, nutritionists, massage therapists and chaplains.

We are located at The Kirklin Clinic on the 3rd floor. To find out more or to make an appointment, call our outpatient Supportive Care and Survivorship Clinic at 205-801-8624.

Facing Uncertainty It is normal to feel a wide range of emotions as you face uncertainties about the future for yourself and for your family. There are many different ways of expressing those feelings, and no one way is necessarily “good” or “bad.” You may have heard of “stages” that you will go through, including denial, anger, bargaining, depression, and eventually acceptance. Please be aware that while you may feel any of those things at any time, there is no right way to reach acceptance. Feelings come in waves and can be unpredictable. Just as people are different in expressing their feelings, people also have different ways to cope with these feelings. There is no right or wrong way to approach it – do what works for you. Many people turn to their faith or sense of spirituality as a primary source of support. Finding peer support from a fellow cancer patient can help, and your social worker can link you with organizations that make these matches. Other people turn to creative or artistic outlets by journaling, writing poetry, drawing, sculpting, and many other mediums. For many, professional counseling can provide regular and ongoing support to find ways to cope.

TAB FOUR | TAKING CARE OF YOURSELF 77 patient guide As Emily Dickinson wrote, “hope is the thing with feathers that perches in the soul.” There is much to hope for, even in the face of advanced cancer. Cancer does not take away your hope for what you can make out of whatever time you have left. While many people want an answer to “how long do I have left?”, this is a very difficult thing for doctors to predict. While there are statistics that can make some predictions, factors such as your will, faith, and personality are not “measurable.” Keep your focus on living each day as well as possible.

For patients with serious illness, care needs can be increasingly complicated. The Supportive Care team works as an interdisciplinary team to coordinate the care of patients with serious illness, clarify goals of care, optimally manage symptoms, and support quality of life for patients and caregivers.

Supportive Care (also called Palliative Care) is a field of medicine that emphasizes improving quality of life whether early in diagnosis, during the course of treatment, or at the end of life. This care is not just for people at the end of life, as much of the expertise and resources are helpful to people who will have normal life expectancy at the completion of treatment.

For patients who are approaching the end of life, however, UAB provides world class palliative care. The UAB Center for Palliative and Supportive Care is dedicated to providing compassionate clinical care to those who are in need. The nationally recognized Palliative and Supportive Care Program at UAB includes national leaders in clinical care and research. Resources include the inpatient Palliative and Comfort Care Unit (PCCU) including staff with advanced training and certification in the care of patients with end of life needs. The Palliative Care team includes physicians, nurses, social workers, psychologists/counselors, nutritionists, massage therapists, music therapists, art therapists, and chaplains. The team works in a coordinated way with your cancer care team to ensure optimal quality of life for each patient.

If you or a loved one would benefit from inpatient Palliative Care services, talk to your oncology professional, your social worker, or your patient care coordinator. You can also call the inpatient unit at 205-975-0826 to speak with someone about inpatient services.

For outpatient Supportive Care, Palliative Care and Survivorship, call our clinic nurse at 205-801-8624.

Hope-and-Cope Program for Pediatric Cancer Patients and Families Over the past several years great strides have been made in curing childhood cancer, but the journey is frequently long and can be hard. The Hope-and-Cope program within the UAB Division of Pediatric Hematology and Oncology at Children’s of Alabama provides family-centered care to help children and their families cope with the extraordinary practical and emotional challenges of childhood cancer and other blood disorders. The program strives to improve emotional health, well-being, and quality of life of children with chronic/life- threatening illness and their families through: A child’s diagnosis with a chronic / life threatening disease reverberates throughout the family system leaving no member untouched. The Hope-and-Cope program has a caring and dedicated team of staff members that addresses the unique needs and challenges experienced by the child and ease the family’s journey.

To ensure continuity of care each child and his or her family are assigned a primary social worker. We also have assembled a dedicated team of especially trained individuals including child life specialists, chaplain, pediatric psychologist and neuropsychologist, teacher, counselor, and art therapist to provide a seamless flow of evidenced-based psychosocial services from diagnosis onwards. The Hope-and-Cope program makes a difference in the lives of children and families coping with tough times that are often beyond belief! To learn more about this program, please visit the website at: www.childrensAL.org/committedtoacure

TAB FOUR | TAKING CARE OF YOURSELF 78 patient guide TAB FIVE RESOURCES

Patient Navigation Social Work Legal: Practical Suggestions Financial Issues: Practical Suggestions Educational Programs for Patients, Families and Caregivers Courage Companions – One-on-One Phone Support UAB Pastoral Services Support Groups The Kirklin Clinic Patient Resource Library: Finding Reliable Information Reading List Hotel Accommodations Temporary Housing Options Area Restaurants, Banks Wigs and Head Care Prosthesis

79 RESOURCES Patient Navigation Patient Navigation is a patient support service in which trained “navigators” guide patients through the cancer care system. The navigator helps to eliminate barriers and manage the challenges involved with cancer to help patients get the care they need. The Patient Navigator Program at the UAB Comprehensive Cancer Center is a free service available to help patients and their family members navigate their health care. Professional and trained staff can assist in developing solutions to meet specific problems and concerns. It’s our job to make sure that you get the help and support you need to make decisions that are right for you.

At the UAB Comprehensive Cancer Center, we believe in treating the whole patient – both physically and mentally. A personal navigator may be assigned to help you with any questions, concerns or difficulties you may face along the way. We want to make sure that you are getting the best possible care.

The Patient Navigator can:

• Guide you through the health care system and get you to your appointments.

• Answer questions and support you throughout your treatment.

• Connect you with community and social services resources and support.

• Assist in completing insurance forms.

• Help you find information on health care.

• Provide assistance with financial concerns.

• Encourage and inform you and your family.

• Assess your unique concerns and needs.

To learn more about the Patient Navigation Program at the UAB Comprehensive Cancer Center, call 1-866- 843-8277 or visit www.uabmedicine.org/

American Cancer Society Patient Navigation The UAB Comprehensive Cancer Center has an on-campus American Cancer Society (ACS) patient navigator located in the Patient Resource Library of The Kirklin Clinic. The patient navigator establishes contact with cancer patients and is available to listen and/or provide them with information resources (booklets, pamphlets, etc.), support programs (Look Good. . . Feel Better; Man to Man; Touch; etc.), and services (wigs, scarves, housing, etc.).

American Cancer Society Patient Navigator (205) 502-9958 Location: The Kirklin Clinic Patient Resource Library Hours: Monday thru Friday, 8:30 a.m. to 4:30 p.m. To learn more, visit www.cancer.org

TAB FIVE | RESOURCES 80 patient guide Social Work Your UAB Comprehensive Cancer Center medical team may refer you to one of our oncology social workers, who are able to help you and your family manage many of the difficulties associated with a cancer diagnosis. An oncology social worker is an important member of the health care team and can provide you and your family with counseling, education and information services, as well as referrals to community resources.

For most people, a cancer diagnosis brings new feelings and experiences, and an oncology social worker can help people work through these issues. An oncology social worker understands that there are many aspects of a person’s life that contribute to his or her cancer experience, such as a person’s ethnicity, spirituality, and family situation, and that cancer also affects each person differently. He or she talks to people about the different aspects of adjusting to the cancer, and helps find strategies to adapt to and manage health care concerns. Talking with a professional who has helped other people manage similar situations may help a cancer patient find ways to improve his or her quality of life, manage fears and find hope. This process can happen through individual, couples and family counseling; support groups; and referrals to community agencies that have additional support programs.

Another role of an oncology social worker is as a liaison between the person with cancer and the medical team. Because an oncology social worker has advanced training in cancer treatment and how these treatments affect a person with cancer, he or she can help patients and their families understand the treatment options. For example, an oncology social worker helps gather and organize the information people need to make decisions about their care and arrange a meeting with the patient, family members and the medical team to discuss the those options. A social worker can also refer people to additional educational resources and to community organizations that have information about cancer.

An oncology social worker helps people connect to the resources they need to find practical help. For some people, this involves a referral to the financial aid office of the hospital, or instructions for applying for disability, or an explanation of rights covered under the Family Medical Leave Act. For others, it means learning about support groups at a local community wellness center. An oncology social worker can also help begin discussions about the cost of cancer care.

The physicians and staff of the UAB Comprehensive Cancer Center understand that cancer not only affects the physical body, but it can also affect personal thoughts and feelings. Not only do we want to attend to your physical needs, but we want to provide you with the emotional and social well-being you and your family will need throughout your treatment program. Please talk to your care team to see how an oncology social worker can help you. There is no charge for the service and your confidentially will always be respected.

Legal Issues: Practical Suggestions Disclaimer: The information below is provided as general information for you, but does not constitute legal advice or recommendations. You should consult your attorney for legal advice.

TAB FIVE | RESOURCES 81 patient guide Advance Directives Advance directives for health care are signed legal documents informing you, your family and health care teamof your wishes for future medical care if you become too sick to speak for yourself (Living Will). You can also name a person you would like to make medical decisions for you if you are too sick to speak for yourself (Health Care Proxy). A living will is a statement that indicates to family and the health care team whether or not you want your life prolonged by medical procedures if you are near death with little chance of recovery. This document allows you to refuse treatment once you are incapacitated. A Health Care Proxy allows you to name an individual to make medical decisions on your behalf. The documents must be signed and witnessed while you are mentally capable in order to be considered valid. At your request, your treatment team will furnish you with an Advance Directive form that includes a Living Will and Health Care Proxy for you to review.

Patient Bill of Rights In 1998, the U.S. Advisory Commission on Consumer Protection and Quality in the Health Care Industry adopted a Consumer Bill of Rights and Responsibilities. This is also known as the Patient’s Bill of Rights.

This document was created with three major goals: 1. To help patients feel confident in the U.S. health care system 2. To stress the importance of a strong relationship between patient and doctor 3. To stress the role patients play in their health by identifying rights and responsibilities of both patient and doctor.

There are eight key areas of the Patient’s Bill of Rights:

1. Information Disclosure – Patients have the right to accurate and easy-to-understand information about their health plan, doctors and the health care facility. 2. Choice of Providers and Plans – Patients have the right to choose doctors who can provide high- quality health care when needed. 3. Access to Emergency Services – Patients have the right to be screened and stabilized using emergency services, without waiting for authorization and without financial penalty. 4. Participation in Treatment Decisions – Patients have the right to know their treatment options and take part in the decision about their care. 5. Respect and Non-Discrimination – Patients have the right to respectful, considerate care from all health care providers that does not discriminate. 6. Confidentiality of Health Information– Patients have the right to talk privately with their doctor and to have their health information protected. They have the right to read and copy their own medical record, as well as the right to ask their doctor to change the record if it is not accurate, relevant or complete. 7. Complaints and Appeals – Patients have the right to a fair, fast and objective review of any complaint against their health plan, doctors, hospitals or other health care staff. 8. Other Bills of Rights – This bill of rights focuses on hospitals and insurance plans. There are other bills of rights for special focuses, such as mental health and hospice.

TAB FIVE | RESOURCES 82 patient guide ORGANIZING/STORING IMPORTANT RECORDS AND PAPERS A cancer diagnosis usually includes many records and other paperwork. These may include medical records, insurance forms, and invoice and billing statements. These documents are important; having a system for accessing them easily will help both you and your medical team.

There are several ways to organize your documents, some of which are simple. You can keep papers in a filing cabinet drawer, a box or a three-ring binder that is indexed for specific categories. For a more detailed system, you can contact an organizing service or ask family members or friends what works best for them.

To Get Started:

• Base your filing system on information you need and who needs access to it. Use the method or system that works best for you and will allow you to easily find the information you need.

• Label boxes or files by categories. Personal information may include bank records, insurance policies, medical records and copies of advance directives. Don’t forget to include medical payment records, statements, notes made about important conversations with doctors, health insurance representatives, and employers.

• Keep important papers in one location. If possible, file papers as soon as you get them to insure they don’t get lost, discarded or misfiled.

• Teach your organizing and record-keeping system to a trusted family member or friend in the event there is an emergency or a time when extra help is needed.

If you scan and save important documents to your computer as a paperless filing system, make sure you back up your computer data on a regular basis. Keep a recent copy of your backup data in a safe place (safe deposit box or fireproof safe). If someone else has access to your computer files, make sure they have updated user names and passwords necessary to use the computer files. If you store your medical records information on a “jump drive,” be sure to password-protect that device. Remember to let a family member know the password in case you are unable to provide it.

TAB FIVE | RESOURCES 83 patient guide Where to Store Legal Documents

DOCUMENT WHERE TO STORE

Duplicate Signed Originals: with you and your Durable Power of Attorney for Financial Affairs attorney Copies: with your appointed representative

Duplicate Signed Originals: with your representative and your attorney

Durable Power of Attorney for Health Care Copies: with your primary doctor, health care team, nursing home and/or hospital

Duplicate Signed Originals: with your doctor and representative Advance Directives Copies: close family members

Original: with your doctor Do Not Resuscitate Orders Copies: with person you have designated to act on your behalf

From Navigation Network: Tools for Breast Cancer Survivorship; Legal and Financial Workbook for Cancer Survivors; Appendix 5/How To Organize Important Records; pp. 69-79; UAB Comprehensive Cancer Center, 2009. Produced in collaboration with David S. Landay, Esq., author of Be Prepared: The Complete Financial, Legal and Practical Guide for Living with Cancer, HIV, and Other Life-Challenging Conditions. New York: St. Martin’s Press, 1998.

TAB FIVE | RESOURCES 84 patient guide FINANCIAL ISSUES: PRACTICAL SUGGESTIONS Health Insurance Health insurance plans are complicated and can be overwhelming, but it is important to know what services your plan covers. Knowing up front the amount of coverage you have for treatment will help you budget your income. The first step is to know exactly what your policy covers, including treatment, medications and co- pays for doctor visits. Having this information allows you to calculate out-of-pocket expenses. Many health insurance companies assign a healthcare coordinator to help you navigate through the complications of filing, payments, etc. Be sure to ask your health insurance plan administrator about this service.

Financial Assistance When the financial cost of health care has exceeded your ability to pay, there are some options available to cover medical and indirect expenses. Some indirect expenses include transportation, lodging when treatment is far away from home, long-distance telephone charges, nutritional supplements and special equipment.

Some options include:

Life Insurance: “Living Benefits” allow you to use the policy death benefits and access the money you would receive upon your death. The policyholder receives the money that would typically go to your family at your death. You should contact your insurance company to see if this benefit is an option for you.

Viatical Settlement: Another option is to sell your life insurance policy through a “viatical.” Viatical settlements were originated as a way to help the gravely ill pay their bills.. The insured terminally ill patient gets a percentage of the death benefit in cash, and the investors get a share of the death benefit when the insured dies.

Loans: You may be able to use your life insurance policy as collateral for a loan. Some banks may lend money to chronically ill patients who have a life expectancy between six months and five years. You should contact your bank to see if they make this type of loan.

For questions regarding loans and life insurance policies, you should contact:

Alabama Department of Insurance 201 Monroe St. Montgomery, AL 36104 Phone (334) 269-3550 Fax (334) 241-4192 http://www.aldoi.gov/Consumers/BenefitsQandA.aspx

TAB FIVE | RESOURCES 85 patient guide GOVERNMENT ASSISTANCE Social Security Disability Insurance If you have paid into Social Security for much of your life and then become disabled, you may qualify for disability benefits. Benefits begin after five months of becoming disabled. The Social Security Administration has a very strict definition of disability. If you are denied coverage, you may appeal the decision by writing a letter to obtain your disability rights. Or, you may decide to hire an attorney for the appeals process for better representation of your case. If you do receive Social Security Disability Insurance (SSDI), you can become eligible for Medicare after 24 months. To apply for SSDI, you should call the Social Security Administration at 1-800-772-1213 or apply online at http://www.ssa.gov/redbook/eng/main.htm.

Supplemental Security Income This is a supplement to your income or the family of someone who is disabled. To qualify, you must have low income and assets and be disabled, over age 65 or legally blind. The Supplemental Security Income Web site has a Benefit Eligibility Screening Tool (BEST) to see if you are eligible. For more information, you should call 1-800-772-1213 or go to their Web site at www.ssa.gov/ssi.

Temporary Assistance for Needy Families (TANF) This is a program that provides financial assistance to low-income families by granting federal funds to state entities. In Alabama, the AL Department of Human Resources allocates money through the Family Assistance Program. For more information on the Family Assistance Program, call 334-242-1773 or go to their Web site at www.tanf.us/alabama.html.

Drug Assistance Programs Some pharmaceutical companies and foundations offer free or nearly free medications to patients who are underinsured or cannot afford them. To meet qualification requirements, you will need to provide tax forms, pay stubs and/or bank statements. You will need to contact the individual company or foundation. The Caring for Cancer Program has an online database that gives information and forms for almost every cancer drug and pharmaceutical program. Go to http://www.caring4cancer.com/go/cancer/financial/help-with-costs/DrugAssistancePrograms. aspx or Google Caring4Cancer and follow the links to Patient Assistance Programs for the Underinsured.

Outside Organizations There are other organizations that provide small grants to help patients for short periods of time. Some programs are diagnosis-specific, while others will only cover certain parts of your treatment, co-pays and medications.

TAB FIVE | RESOURCES 86 patient guide FINANCIAL ASSISTANCE PROGRAMS

ORGANIZATION CONTACT INFORMATION PROGRAM INFORMATION

1-800-227-2345 Transportation assistance, temporary American Cancer Society www.cancer.org housing, wigs, prescription assistance

1-800-813-4673 Transportation, homecare, childcare, CancerCare www.cancercare.org medications Co-payment assistance for CancerCare Co-Payment 1-866-55-COPAY pharmaceutical products (must have Assistance www.cancercarecopay.org insurance and be below 400% of US poverty line)

1-877-968-7233 Co-payment assistance for Chronic Disease Fund www.cdfund.org pharmaceutical products (must have private insurance or Medicare part D)

1-800-675-8416 Aid with co-payments, premiums, co- Healthwell Foundation www.healthwellfoundation.org insurance or out-of-pocket expenses

Patient Access Network 1—866-316-7263 Deductibles; co-payments and co- Foundation www.patientaccessnetowrk.org insurance Partnership for Prescription 1-888-477-2669 Access to 475 public and private patient Assistance www.pparx.org assistance programs Co-payment assistance for Patient Advocate Foundation’s 1-866-512-3861 pharmaceutical products to insured Co-Pay Relief Program www.copays.org patients Co-payment assistance for 1-877-465-6636 Susan G. Komen for the Cure pharmaceutical products to insured http://ww5.komen.org patients

Ronald McDonald House (630) 623-7048 Free or reduced-cost lodging for families Charities www.rmhc.com of ill children receiving medical treatment

www.needymeds.org Information source for companies that NeedyMeds offer patient assistance programs

Information on patient assistance RxHope 877-267-0517 RxHope programs and online patient assistance www.rxhope.com application For additional information, please contact Social Services at: Inpatient (UAB) (205) 934-4737 Outpatient (The Kirklin Clinic) (205) 801-8269

TAB FIVE | RESOURCES 87 patient guide Educational Programs for Patients, Families and Caregivers The UAB Comprehensive Cancer Center believes that education is critical for helping patients with cancer, and their family members, cope with the disease. Our new patients can attend a weekly orientation program to get answers to questions about: who to call when help is needed; what to expect at their appointments; where to find practical and valuable resources that can make life a little easier for patients and families; how to manage treatment-related symptoms; and much more.

For most people with cancer, living with the disease is the biggest challenge they have ever faced. The disease changes your routines, roles and relationships. Through our free, monthly educational series, Living With Cancer, patients can learn from leading experts on topics related to living, and coping, with cancer. These talks are designed to help patients navigate the challenges of their cancer journey and to provide opportunities to learn from and interact with UAB professionals including oncology nurses, physicians, therapists, dietitians, and financial advisors. The talks include: “Managing Depression and Stress” and “Nutrition for the Cancer Patient”, “Spirituality: Having a Guide for Your Journey”, “The Impact of Cancer on the Family”; “Compassion Fatigue” and “Survivorship: Living Beyond a Cancer Diagnosis.”

For more information on the latest topics, dates, times and locations, go to www.uab.edu/cancer, “Patient Care” and “Education.”

Courage Companions Fear of what lies ahead often accompanies a cancer diagnosis and we want you to know that you do not have to face the fear alone. Through the Courage Companions program you will connect with another individual who has faced similar challenges.

At the UAB Comprehensive Cancer Center, we understand that the fight against cancer is more than a physical battle-it’s an emotional journey as well. We are dedicated to treating the entire person and hope that our program and services make your experience here as positive as possible.

The Cancer Center is proud to offer Courage Companions, a program providing you with emotional support throughout your cancer journey. See below for answers to some common questions about the service.

Q: How does Courage Companions work? A: Once you have enrolled in the program you will be matched with a volunteer who has been personally touched by cancer and trained to help others. While friends and family can be caring and compassionate, no one can truly understand the challenges of having cancer like those personally affected. In most cases your volunteer will have experienced the same type of cancer and under similar circumstances as you.

Q: How do I sign up? A: Call (205) 996-5364.

TAB FIVE | RESOURCES 88 patient guide Q: What does the program include? A: Currently the program includes personal, phone and/or online support. Volunteers help their referrals cope with the physical, emotional and spiritual aspects of their cancer experience. The unique relationship enables patients and caregivers to talk freely, share concerns and express fear without feeling they are hurting or overburdening their loved ones. It is a confidential service.

Q: Is there a fee for the program? A: No. The Cancer Center is proud to partner with Houston-based Cancare to provide this service to you

Pastoral Care/Chaplaincy Services at UAB Cancer can be a difficult and demanding experience for patients and families. For many people, spiritual resources or faith is a source of strength, support and comfort during this time. Chaplains are an integral part of the health care team available to patients and their families 24 hours a day while receiving care at the UAB Comprehensive Cancer Center.

The Pastoral Care Department is located on the first floor of the West Pavilion lobby, Room 125, next to the Interfaith Chapel. The Interfaith Chapel is always open for prayer, meditation and reflection.

When to Call a Chaplain:

• A patient or family member would appreciate emotional or spiritual support;

• A patient or family member would like prayer or spiritual counseling;

• A patient or family member is struggling with issues of grief or loss;

• When discouragement, depression or anxiety threatens a patient’s healing.

How to Request a Chaplain:

• Ask any hospital staff member to contact a chaplain for you.

• Call *55 from within UAB Hospital and ask the operator to page the “Chaplain on Call” to come to your room.

• Call (205) 934-3411 and ask the operator to page the “Chaplain on Call” to come to your room.

• Visit the Pastoral Care Department online at www.uabmedicine.org or call (205) 934-4254.

TAB FIVE | RESOURCES 89 patient guide Cancer Support Groups

MEETING TIME/ NAME OF GROUP CONTACT TYPE OF GROUP LOCATION

For more information and For children who are Camp is held twice a year registration go to the Alabama dealing with a family (Spring and Winter) from 9 Camp New Hope Foundation for Oncology Web member’s cancer a.m.- 4 p.m. site: diagnosis. www.alfoundationforoncology.org Day: 3rd Monday of the month Support group for Time: 10:30 a.m. – Noon adults with malignant Brain Buddies Phone: (205) 934-2921 (Lunch provided) brain tumors and their families. Place: The Kirklin Clinic Room: 5th Floor Neuro-oncology Day: 3rd Friday of the month Time: 12:00 pm Phone: 205-934-7509 (Lunch provided) Place: American Cancer After Hours Paging: Society 205-996-4662 Ovarian, cervical, 1100 Ireland Way endometrial, Suite 201 Birmingham, Alabama CanSurvive Email address: uterine and other [email protected] gynecological Day: 3rd Sunday of the cancers. month Web site: Time: 2-4 pm www.cansurvivesupportgroup.org Place: Brookwood Wellness Center at Gold’s Gym 1090 Montgomery Hwy Vestavia, Alabama Provides one-on-one Courage emotional support Phone: (205) 996-5364 Call for information Companions for patients and caregivers. Day: 2nd Tuesday of the month Phone: (205) 801-8266 A support program If automated system picks available to newly Time: 10:30 a.m. – 1 p.m. New Beginnings up, press option 6 and leave diagnosed breast your RSVP or request for cancer patients and Place: The Kirklin information. their families. Clinic Room: 5th Floor Conference Room (Lunch provided)

TAB FIVE | RESOURCES 90 patient guide MEETING TIME/ NAME OF GROUP CONTACT TYPE OF GROUP LOCATION

A support group for Quarterly meetings at New Light patients with triple various locations. Please Phone: (205) 975-7912 negative breast call for meeting dates and cancer. times. Orthopedic Oncology Phone: (205) 930-8564 For patients with Please call for meeting Support Group orthopedic cancers. dates and times. Day: 1st Tuesday of the month Time: 10:00 am Radiation For cancer patients Oncology Phone: (205) 975-5628 receiving radiation Day: 2nd Thursday of the Support Group therapy. month Time: 4pm Call for locations.

Day: 3rd Tuesday of the month Time: 11:30 am

US TOO Phone: (205) 326-9439 Place: [email protected] Prostate cancer American Cancer Society 1100 Ireland Way Suite 201 Birmingham, Alabama (Lunch Provided) Day: 4th Tuesday of the month

Phone: 205-558-7861 Time: 11:30 a.m. Young Breast Kristen Taylor Breast cancer Cancer Survivors [email protected] (patients under age Place: American Cancer Support Group Society 45) 1100 Ireland Way Suite 201 Birmingham, Alabama (Need to bring your own brown bag lunch) Day: 2nd Tuesday of the month A breast cancer support group that Time: 7:00 p.m. offers education and Gold’s Gym BCRFA Support Phone: 205-801-8266 or support for individuals Group Place: Classroom B 205-934-6454 with BRCA1 and Brookwood Wellness BRCA2 gene Center mutations and their 1090 Montgomery families. Highway Vestavia Hills, AL

TAB FIVE | RESOURCES 91 patient guide Community Grief Support

NAME OF CONTACT TYPE OF GROUP MEETING TIME/LOCATION GROUP

Alabama Grief Support Services facilitates meetings Providing grief in locations across the local Alabama Phone: (205) 870-0336 support sessions for area. Please visit their Web Grief Support alabamagriefsupp@bellsouth. those who have lost site for details: net Services a family member. www.alabamagrief.org/meeting.html

Phone: (205) 638-7481 Amelia Center offers several Web site: www.ameliacenter. programs for both individual Grief support for Amelia Center org and group support. For more children, parents and Address: Arlington Business information, please visit the families who have Center 1513 Fourth Avenue Web site at: suffered a loss. South, Birmingham, www.ameliacenter.org Alabama 35233 or call Amelia Center. 11 a.m. Thursdays @ Cracker Barrels in Metro Area

1st Thursday-Gardendale 901 Fieldstown Road

2nd Thursday-Pelham Phone: (205) 313-2800 Offering Grief 655 Cahaba Valley Road Care First [email protected] Groups “Eat ‘n’ Meet.” 3rd Thursday-Trussville 4710 Norrel Drive

4th Thursday-Bessemer 5040 Academy Lane

Ask hostess where the Grief Group is meeting. Chaplain’s Office UAB West Phone: (205) 481-7359 Offering grief support Support Group Address: 995 9th Avenue SW Call for more information for any adult loss. Bessemer, AL 35020

Provides support for Phone: (205) 870-8667 Community grieving adults (19 Call for information or visit the www.communitygriefsupport. Grief Support years or older in a Web site for group meeting org Services group or individual dates, times and locations. setting.)

TAB FIVE | RESOURCES 92 patient guide The Kirklin Clinic Patient Resource Library The Kirklin Clinic Patient Resource Library is a one-stop information source for all medical-related questions. The library’s original focus was solely on cancer, but after a new location and increased funding, the library was able to expand to cover all diseases, not just cancer.

The library provides a variety of sources for research, including Internet access, medical booklets, reference texts and tapes. Trained staff can assist visitors with their searches for information. The library also has additional space to be used for viewing health videos and for private interactions between staff and patients regarding clinical trials and consultations.

HOW TO FIND RELIABLE CANCER INFORMATION ON THE WEB: Accuracy

• The authors are listed on the website, with their contact information • It is easy to identify the authors’ affiliations and experience • The information on the website can be verified by another source • The website does not have obvious grammatical or spelling errors

Authority

• The author of the information has the expertise to provide authoritative information on this particular topic • References are provided for the information • The website is backed by a known organization • There is an “About Us” section, describing the purpose of the organization and providing contact information

Objectivity

• The purpose of the website is clearly stated • The sponsors of the website are apparent • There are no advertisements on the Web site • The website focuses on facts and does not seek to “play on emotions” • The website does not make “questionable” claims

Current The information should be reviewed regularly by health professionals and updated; The links to other pages should be up-to-date and working.

TAB FIVE | RESOURCES 93 patient guide For more information: The Kirklin Clinic Patient Resource Library Location: 2nd Floor, next to the crosswalk Hours: Monday thru Friday, 8:30 a.m. to 4:30 p.m. (205) 502-9956 [email protected]

UAB Comprehensive Cancer Center Learn more about leading-edge research, patient care and community activities at the UAB Comprehensive Cancer Center (205) 934-0282 www.uab.edu/cancer

UAB Medicine For an appointment or more information about UAB Medicine contact UAB HealthFinder (205) 934-9999 www.uabmedicine.org/cancer

National Cancer Institute (NCI) The leading government organization in the United States dedicated to cancer information and research. (800) 4-CANCER (1-800-422-6237) www.cancer.gov www.cancer.gov/espanol

American Society of Clinical Oncology A non-profit organization, ASCO supports all types of cancer research, but in particular, patient-oriented clinical research. (571) 483-1300 www.asco.org

Cancer.Net A service of the American Society of Clinical Oncology (ASCO). www.cancer.net

Cancer.Net en Espanola The Cancer.Net service in Spanish. http://www.cancer.net/patient/Cancer.Net+En+Espa%C3%B1ol

American Cancer Society Provides information on all types of cancer, general coping and on chemotherapy drugs. (800) ACS-2345 (1-800-227-2345) www.cancer.org

TAB FIVE | RESOURCES 94 patient guide Cancer Care A non-profit organization whose mission is to provide free professional help to people with all cancers. (800) 813-HOPE (1-800-813-4673) www.cancercare.org

Cancer Hope Network One-on-one support for cancer patients and their families. (800) 552-4366 www.cancerhopenetwork.org

Clinical Trials* Registry of federally and privately supported clinical trials conducted in the United States and around the world. Provides information about a trial’s purpose, who may participate, locations and phone numbers for more details. www.clinicaltrials.gov *This information should be used in conjunction with advice from health care professionals

Guide to Internet Resources for Cancer A collection of Internet resources providing cancer information. www.cancerindex.org

The Lance Armstrong Foundation A group that unites, empowers and inspires people affected by cancer and advocates for research funding. (886) 673-7205 www.livestrong.org

The Lymphoma & Leukemia Society This organization is the world’s largest voluntary health agency dedicated to blood cancers. This site provides free information and support services for patients and families with leukemia, lymphoma, Hodgkin’s disease and myeloma. (800) 955-4572 www.leukemia.org

Medline Plus The U.S. National Library of Medicine and the National Institutes of Health Services offers a medical encyclopedia, dictionary, drug and supplement information, and interactive tutorials for more than 165 procedures. www.medlineplus.gov

National Children’s Cancer Society The National Children’s Cancer Society works to improve the quality of life for children with cancer and their families worldwide and serves as a financial, emotional, educational and medical resource for those in need at every stage of their illness and recovery. (314) 241-1600 http://www.nationalchildrenscancersociety.com/NetCommunity/Page.aspx?pid=448

TAB FIVE | RESOURCES 95 patient guide National Coalition for Cancer Survivorship This organization is dedicated to cancer survivorship. They are advocates for policy issues and have had impact on the definition and treatment of cancer survivors. (888) 650-9127 www.canceradvocacy.org

National Comprehensive Cancer Network Information on cancer research and treatment from an alliance of 21 of the world’s leading cancer centers. (215) 690-0300 www.nccn.com

Pubmed Database provided by the U.S. National Library of Medicine and the National Institutes of Health. Provides citations and abstracts to articles published in the biomedical literature. Free to everyone. www.pubmed.gov

Susan G. Komen for the Cure This organization is the global leader in the fight against breast cancer. This site is a great place to gain information about diagnosis and treatment, share your breast cancer story, and get involved in the fight against breast cancer. (877) GO-KOMEN (1-877-465-6636) www.komen.org

TAB FIVE | RESOURCES 96 patient guide READING LIST* Fighting Cancer with Knowledge and Hope by Richard C. Frank, MD There’s No Place Like Hope: A Guide to Beating Cancer in Mind-sized Bites by Vickie Girard 100 Questions and Answers About Cancer: A Series on Multiple Types of Cancers published by Jones and Bartlett. Cancer: 50 Essential Things to Do: 3rd Edition by Greg Anderson Everyone’s Guide to Cancer Therapy: How Cancer Is Diagnosed, Treated and Managed Day to Day by Andrew Ko, MD; Ernest H. Rosenbaum, MD; Malin Dollinger, MD You’re Not Alone - A Practical Guide for Maintaining Your Quality of Life While Living with Cancer by Ernest H. Rosenbaum, MD Understanding Cancer: A Patient’s Guide to Diagnosis, Prognosis, and Treatment by C. Norman Coleman, MD The Chemotherapy Survival Guide: Everything You Need to Know to Get Through Treatment by Judith McKay and Tamera Schacher Chemotherapy and Radiation for Dummies by Alan Lyss, Humberto Fagundes, and Patricia Corrigan The Breast Cancer Care Book by Sally M. Knox, MD Just Get Me Through This!: The Practical Guide to Breast Cancer by Deborah A. Cohen It’s Not About the Hair: And Other Certainties of Life and Cancer by Debra Jarvis Surviving Prostate Cancer, 2nd Edition by Dr. Patrick Walsh Dr. Peter Scardino’s Prostate Book, Revised Edition: The Complete Guide to Overcoming Prostate Cancer, Prostatitis, and BPH by Peter T. Scardino, MD Man to Man: Surviving Prostate Cancer by Michael Corda Conquer Prostate Cancer: How Medicine, Faith, Love and Sex Can Renew Your Life by Rabbi Edgar J. Weinsberg Saving Your Sex Life: A Guide for Men with Prostate Cancer by John P Mulhall A Primer on Prostate Cancer: The Empowered Patient’s Guide by Stephen Strum Living with a Brain Tumor: Dr. Peter Black’s Guide to Taking Control of Your Treatment by Peter Black Damn The Statistics, I Have a Life to Live!: Coping with a Brain Tumor My Personal Story by Harry Wolf Brain Tumors: Leaving the Garden of Eden--A Survival Guide to Diagnosis, Learning the Basics, Getting Organized, and Finding Your Medical Team by Paul M. Zeltzer Curveball: When Life Throws You a Brain Tumor by Liz Holzemer Everyone’s Guide to Cancer Supportive Care: a Comprehensive Handbook for Patients and Their Families by Ernest Rosenbaum Everyone’s Guide to Cancer Survivorship: A Road Map For Better Health by Ernest Rosenbaum, MD, et al This Time’s a Charm; Lessons of a Four-Time Cancer Survivor by Donald A. Wilhelm What Helped Get Me Through: Cancer Survivors Share Wisdom and Hope by Julie K. Silver Return to Wholeness: Embracing Body, Mind, and Spirit in the Face of Cancer by David Simon, MD Perseverance: True Voices of Cancer Survivors by Carolyn Rubenstein Everyday Strength: A Cancer Patient’s Guide to Spiritual Survival by Randy Becton Help Me Live: 20 Things People with Cancer Want You to Know by Lori Hope Caring for the Patient with Cancer at Home (American Cancer Society) Faith, Hope and Healing: Inspiring Lessons Learned from People Living with Cancer by Bernie Siegel, MD Confronting Cancer with Faith by Karen Allen Finding the Light in Cancer’s Shadow: Hope, Humor and Healing After Treatment by Lynn Eib Life, Faith, and Cancer by Rabbi Douglas J. Kohn The Journey Home: My Father’s Story of Cancer, Faith and Life-Changing Miracles by Joseph M. Hanneman The Secret C: Straight Talking About Cancer by Julie Stokes (Juvenile) Someone I Love is Sick: Helping Very Young Children Cope with Cancer in the Family by Kathleen McCue When a Parent Has Cancer: A Guide to Caring for Your Children by Wendy S. Harpham Our Mom Has Cancer by Abigail Ackermann

TAB FIVE | RESOURCES 97 patient guide Hotels A special UAB rate may be available; please request this as you make your reservation. A UAB shuttle may be available to guests staying in hotels near the medical center or downtown area. Please ask at the front desk upon check-in.

Aloft Embassy Suites Hotel 1903 29th Avenue South (SoHo Square 2300 Woodcrest Place (205) 874-8055 (Highway 31 & US 280) (205) 879-7400 Alta Vista Hotel 260 Goodwin Crest Drive Hampton Inn (2 miles from Hospital) 2731 Highway 280 South (205) 290-8000 (Mountain Brook) (205) 870-7822 Baptist Association Located on the 7th Floor of the UAB Townhouse Hampton Inn (205) 975-1861 2731 Highway 280 South (Mountain Brook) Best Western Carlton Suites (205) 870-7822 140 State Farm Parkway (205) 940-9990 Hampton Inn & Suites 3910 Grants Mill Road Comfort Inn (205) 933-0444 Homewood/Oxmoor (226 Summit Parkway) Holiday Inn Express (205) 916-0464 811 Old Grants Mill Road (205) 957-0555 Courtyard by Marriott 1820 5th Avenue South Homewood – Inverness Suites by Hilton (attached to Hospital) 215 Inverness Center Drive (205) 254-0004 (205) 995-9823

Courtyard by Marriott Hospitality Inn – Medical Center 500 Shades Creek Parkway 2127 7th Ave S (Highway 31 & Lakeshore Drive) (205) 322-0691 Drury Inn & Suites Howard Johnson 3510 Grandview Parkway 275 Oxmoor Road (205) 967-2450 (I-65-South, Exit 256B) (205) 942-0919 Drury Inn & Suites 160 State Farm Parkway Hyatt Place Downtown (205) 940-9500 2024 4th Avenue South (205) 322-8600 Drury Inn & Suites 3510 Grandview Parkway (205) 967-2450 LaQuinta Inn & Suites 60 State Farm Parkway Econo Lodge (I-65 between Oxmoor and Lakeshore Drive) 195 Oxmoor Road (I-65 & Oxmoor Road) (205) 290-0150 (205) 941-0990

TAB FIVE | RESOURCES 98 patient guide LaQuinta Inn & Suites The Historic Redmont Hotel 60 State Farm Parkway 2101 5th Avenue North (I-65 between Oxmoor and (205) 324-2101 Lakeshore Drive) (205) 313-2164 (205) 290-0150 The Hotel Highland Marriott Residence Inn Downtown 1023 20th Street South 821 20th Street South (205) 933-9555 (205) 731-9595 The Sheraton Civic Center Microtel Inn & Suites 2101 Richard Arrington Blvd North 251 Summit Parkway (I-65 & Oxmoor Road) (205) 324-5000 (205) 945-5550 The Tutwiler & Hampton Inn & Suites Motel 6 2021 Park Place 151 Vulcan Road (I-65 & Oxmoor Road) (205) 322-2100 (205) 942-9414 The Winfrey Hotel Quality Inn 1000 Riverchase Galleria 155 Vulcan Road (I-65 & Oxmoor Road) (205) 987 1600 (205) 945-9600 UAB Townhouse Rime Garden Inn & Suites 2008 University Blvd (8th Ave South) 5320 Beacon Drive (205) 975-8820 (205) 314-4022 Value Place Roadway Inn 101 Bishop Circle, Pelham 260 Oxmoor Road (I-65 South, Exit 256A) (205) 444-3008

Ronald McDonald House Wingate 1700 4th Avenue South 800 Corporate Ridge Drive (205) 212 7255 (205) 228-1000

SpringHill Suites by Marriott 3950 Colonnade Parkway (205) 969-8099

Studio Plus 40 State Farm Parkway (I-65 between Oxmoor and Lakeshore Drive) (205) 290-0102

Super 8 Motel- Homewood 140 Vulcan Road (205) 945-9888

The Doubletree Hotel 808 20th Street South (205) 933-9000

TAB FIVE | RESOURCES 99 patient guide TEMPORARY HOUSING OPTIONS* American Cancer Society Joe Lee Griffin Hope Lodge 1104 Ireland Way Birmingham, AL 35205 Phone: (205) 558-7806 The Hope Lodge provides free, temporary housing for people having cancer treatment. A shuttle service to Kirklin Clinic is available. The Hope Lodge usually has a waiting list and is available on a first- come, first-serve basis. Referral from a social worker or nurse is required. Go to www.cancer.org for virtual tour; search for Hope Lodge in Birmingham.

UAB Townhouse Apartments 2008 University Boulevard Birmingham, AL 35233 Phone: (205) 975-8820 $45-$100 per night One Bedroom, One Bath with kitchen is standard, but larger apartments are available.

Homewood Church of Christ Apartments Phone: (205) 942-5683 Call to be placed on waiting list. Located 10 minutes from UAB. These one- and two-bedroom apartments are available at no charge for people receiving treatment, when available. Minimum stay of two weeks required.

Family Place Phone: (205) 257-4425 Free apartments in Birmingham Metro area, maximum stay is seven nights per family. Patient or family needs to call and leave a message to reserve an apartment prior to appointment, available on first-come, first-serve basis.

Mary’s House Phone: (205) 780-2020 Typically provides housing for families when a family member is in hospital, but will consider providing housing for other needs. Note: A referral from a social worker is preferred.

Corporate Housing Provides short term (minimum 30 days) leasing for fully furnished apartments in Birmingham metro area. Monthly rental for one bedroom, bath can range $1,425-$1,800. One-, two- and three-bedroom apartments available.

AHI Corporate Housing – 1-800-505-9001 Premier Living Services – 1-800-987-8828

* While UAB Comprehensive Cancer Center social workers will assist you in finding free and low-cost temporary housing options, UAB cannot guarantee that free or low-cost housing will be available at all times.

TAB FIVE | RESOURCES 100 patient guide Banks ATMs BBVA Compass Compass Bank-West Pavilion 1st Floor UAB Hospital 1st Floor UAB Hospital 2nd floor in the North Pavilion Legacy Federal Credit Union Colonial nd 205-445-2272 West Pavilion-2 Floor UAB Hospital 820 19th Street South Jefferson Towers Cafeteria Legacy Federal Credit Union 2nd Floor UAB Hospital 205-918-1413 1920 4th Avenue South

Regions 205-326-5300 539 Richard Arrington Jr. Blvd

Wells Fargo 205-320-2900 2401 6th Avenue South

Pharmacy Interpretation Services Birmingham Apothecary Language services are available 205-251-4248 for questions about appointments, 1032 20th Street South questions or concerns. For more information, please call or email: Birmingham Nuclear Pharmacy (205) 934-2096) 205-297-0017 [email protected] 2708 7th Avenue South

CVS 205-933-8374 1431 11th Avenue South

Harbin Discount Pharmacy 205-323-2474 521 Richard Arrington Jr. Blvd

Kirklin Clinic Pharmacy 205-801-8000 2000 6th Avenue South

Walgreens 205-939-1417 2101 Richard Arrington Blvd

TAB FIVE | RESOURCES 101 patient guide AREA RESTAURANTS, BANKS, ATMS, PHARMACIES, GROCERY STORES RESTAURANTS

Arby’s Lucy’s Coffee & Tea Sweet Tea 7th Avenue & 21st Street Corner of University BLVD 2205 3rd Ave South (8th Ave.)& 20th St. Becky’s South Burgers TJ’S on Fourth (BBQ) 4th Ave. & 18th St. South and Sandwiches Manchu Wok University Blvd (8th Avenue) 5th Ave. & 19th St. Taziki’s & 20th Street 301 18th Street South McAllister’s 5th Ave. & 18th St. Burger King UAB Food Court – 6th Avenue & 16th Street McDonald’s North Pavilion

5th Ave. & 16th St. Hours of Operation Captain D’s Mon – Fri – 6:00am – 9:00pm 5th Avenue & 16th Street Mellow Mushroom Sat – Sun – 6:00am – 3:00pm

1200 20th St. China Master’s Express UAB Highlands – 3rd Floor 4th Avenue & 18th Street Milo’s Hours of Operation 5th Avenue & 19th Street Breakfast 6:00am – 9:00am Cosmo’s Pizza Lunch 11:00am – 2:00pm 2012 Magnolia Ave. Newk’s 7th Avenue & 21st Street UAB Hospital Cafeteria – Dreamland Bar-B-Que Jefferson Tower, 2nd Floor 14th Avenue & 14th Street Pizza Hut Hours or Operation 5th Avenue & 20th Street Breakfast 6:00am – 9:45am Dunkin Donuts Lunch 11:00am – 2:00pm 2109 6th Ave. Purple Onion Deli and Grill Dinner 5pm – 7:30pm 1717 10th Ave. Late Dinner 9pm – 1am Fish Market 6th Avenue & 22nd Street Qdoba Mexican Grill Waffle House 4th Avenue & 18th Street 1801 4th Avenue Gourmet Cookies UAB - Jefferson Tower, 2nd Floor Sinbad (Mediterranean) Wall Street Deli 5th Avenue & 19th Street 6th Avenue & 21st Street Guthrie’s 4th Avenue & 18th Street Sneaky Pete’s Wings Around the Clock 6th Avenue and 21st Street University Blvd.(8th Ave.) Jim N Nicks Bar-B-Que & 20th St. 11th Avenue & 20th Street Starbuck’s North Pavilion – 2nd Floor Zen Yogurt & Smoothies La’Cocina (Mexican) 5th Ave. & 18th St. 7th Avenue & 21st Street Subway North Pavilion-2nd Floor Lee’s Cuisine (Chinese) 5th Avenue & 19th Street Surin West (Thai) 11th Avenue and 19th Street Los Juane’s (Mexican) 5th Avenue & 19th Street

TAB FIVE | RESOURCES 102 patient guide Grocery Stores Others 5 Points Market Birmingham Public Library 205-254-9132 11th Avenue & 19th Street 1904 11th Avenue South United States Post Office Kmart 11th Avenue & 19th Street 7845 Crestwood Blvd 205-956-5186 UPS Store 230 Green Springs Highway 11th Avenue & 20th Street 205-916-0610 Wigs and Head Care Western Supermarket Anita’s Wigs 205-933-6220 180 Main Street Ste. 128 2230 Highland Avenue South Hoover, AL 35244 (205) 733-2044 Walmart http://anitas-wigs.com 209 Lakeshore Parkway 205-945-8692 Hair Options 1600 Montclair Road 2804 John Hawkins Parkway Ste 102 205-951-3447 Hoover, AL 35244 (205) 982-0851 Shopping Malls http://www.hairopt.com Brookwood Village 205-871-0406 Touching You Lakeshore Parkway 1564 #F Montgomery Highway Birmingham, AL 35216 Eastwood Village (205) 823-6407 205-956-0416 http://www.touchingyou.com 1600 Montclair Road For Ladies Only Riverchase Galleria 650 Olde Towne Rd 205-985-3020 Vestavia Hills, AL 35216-3758 3000 Riverchase Galleria (205) 979-4377

Summit 3608 Highway 78E 205-967-0111 Jasper, Al 35501 135 Summit Boulevard (205) 221-7157

TAB FIVE | RESOURCES 103 patient guide Ways to Give Back Pantene Beautiful Lengths Pantene Beautiful Lengths encourages women and men to grow, cut, and donate their hair to make real hair wigs for women who have lost their hair due to cancer treatments. http://www.pantene.com/en-us/beautiful-lengths-cause/default.aspx

Locks of Love Locks of Love is a public non-profit organization that provides hairpieces to financially disadvantaged children in the United States and Canada under age 21 suffering from long-term medical hair loss from any diagnosis. We meet a unique need for children by using donated hair to create the highest quality hair prosthetics. http://www.locksoflove.org/

Prosthesis UAB Prosthetics and Orthotics Lab Spain Rehab 1717 6th Avenue South Birmingham AL 35233 (205) 934-9656

Other Local Resources: ABC Orthotics & Prosthetics Touching You 3616 7th Court South, Birmingham, AL 1564 Montgomery Highway, Vestavia, AL (205) 324-2461 (205) 823-6407

Biotech Limb & Brace LLC UAHSF Orthotics & Prosthetics 2421 4th Avenue South, Birmingham, AL 1717 6th Avenue South, Birmingham, AL (205) 324-7897 (205) 934-9656

Birmingham Limb & Brace Co U.S. Department of Veterans Affairs: Prosthetics 3624 5th Avenue South, Birmingham, AL (205) 595-0632 700 19th Street South, Birmingham, AL (205) 558-4746 Cox Ocular Prosthetics Inc 700 18th Street South, Birmingham, AL Vet-Co Inc. (205) 939-1990 5544 1st Avenue South, Birmingham, AL

Crystal Medical Technologies (205) 595-3845 153 Cahaba Valley Pkwy, Pelham, AL (205) 733-0901

Ped-orthic Care Orthotics and Prosthetics Center 3141 Lorna Road, Hoover, AL (205) 822-1606

TAB FIVE | RESOURCES 104 patient guide TAB SIX SURVIVORSHIP Survivorship Stories What Lies Ahead How to Coordinate Your Care How to Give Back/Get Involved with the Cancer Community SURVIVORSHIP Sabrina Gilreath When the textile mills near her hometown of Summerville, Georgia, closed, Sabrina Gilreath was out of a job—but she wasn’t out of ideas. The young mother went back to school, earned a certified nurse assistant license, and ventured into a whole new career in health care. Today that same fortitude and willingness to pursue new options is helping Mrs. Gilreath face a more daunting challenge: surviving cancer.

Mrs. Gilreath was just 17 when she began working in the textile mills alongside her mother and sister. Eleven years later, when the mills had shut down or moved offshore, the trio earned their licenses together and started new jobs at a local nursing home, with Mrs. Gilreath working the night shift.

Six months into her new job, Mrs. Gilreath started feeling ill. Initially, she shrugged it off, thinking she probably had the flu. Three weeks passed, and her cough became progressively worse. Then other ominous symptoms began to assert themselves, including temperatures of 102-103 degrees, night sweats, chills and extreme fatigue.

“I was the type of person who never went to the doctor for anything,” she says. “My dad passed away with lung cancer when I was 18, and he was also the type of person who didn’t see the doctor. When he was 34, he finally had symptoms he couldn’t fight off and went to the emergency room. He was admitted to the hospital, diagnosed with terminal lung cancer and given three months to live. I guess that news and his young age made me nervous about seeing doctors. I decided that if I ever developed a terminal illness, I didn’t want to know but would rather tough it out until I passed.”

But Mrs. Gilreath’s illness advanced to the point where she became short of breath and experienced a heavy feeling so intense “that it felt like someone was sitting on my chest,” she says. She finally went to the emergency room. “I thought I probably had pneumonia,” she says. “Unlike my dad, I never smoked cigarettes, so I didn’t think I could possibly have cancer. But after giving me a chest X ray and CT scan, the ER doctor came into my room and told me that I had lung cancer. I was devastated. I wondered how I could have lung cancer when I’ve never smoked. But I learned that I had a different kind of lung cancer called Hodgkin’s lymphoma.”

Mrs. Gilreath’s medical treatment began right away with intensive chemotherapy and radiation treatments. Nearly five years later, chemotherapy was unable to shrink her tumor further, and she was sent to Emory Medical Center in Atlanta for a bone-marrow transplant. But by then, Mrs. Gilreath was too weak to undergo the procedure, and her doctors suggested that she come to the UAB Comprehensive Cancer Center to participate in a first-of-its-kind clinical trial under the care of Senior Scientist Andres Forero, M.D. “Five years of treatment had left me very tired,” she says. “I pretty much spent the fifth year of my treatments lying on the couch, not doing anything. I was so thin and weak that looked like I was on hospice care.”

Today, Mrs. Gilreath is very glad she mustered the strength to participate in the UAB trial because she was introduced to SGN-35, the drug that she says has worked wonders on her health and quality of life.

TAB SIX | SURVIVORSHIP 106 patient guide

“I was told that I made history because I was the first patient in the United States to try SGN-35,” she says. Early in the trial, Mrs. Gilreath noticed her energy level had increased tremendously. “I felt as though nothing was wrong with me at all,” she marvels. “I experienced minor bone pain throughout the treatment, and I became lactose-intolerant, but that was a very small price to pay for feeling great and alive again.”

Mrs. Gilreath’s forward progress continued for a year; then she contracted the flu and experienced a minor setback. Some of her medications also interacted in negative ways. “I experienced minor swelling in some lymph nodes and was taken off the trial for about three months,” she says. “I was put on a chemotherapy drug called Gemzar. When everything got back to normal, I was able to go back on the trial but with a slight increase in SGN-35 dosage.”

Mrs. Gilreath participated in the study for another year without any side effects, except for minor bone pain. Then a few months ago, a lymph node under her left arm, close to the original tumor, began to swell. She was put on two strong antibiotics, but the swelling didn’t subside, so she was taken off the SGN-35 trial and received three and a half weeks of radiation.

This treatment not only diminished the swelling but also reduced the size of the tumor in Mrs. Gilreath’s lung. “I went back for a CT scan, and the doctor didn’t believe the swelling was a tumor—just a really bad infection that wouldn’t go away,” she says. “The radiation took care of it.”

The reduced swelling gave Mrs. Gilreath a grateful break from doctors and tests. “Getting to spend Thanksgiving and Christmas at home is the best gift I could have received,” she says.

Returning to the SGN-35 trial is Mrs. Gilreath’s greatest hope. “I went for more than a year without having any problems,” she says. “The drug not only extends my life, but it might actually become a cure for me or for others. I’m hoping and praying that they let me go back on it.” Mrs. Gilreath, now 37, adds that the treatment has helped her regain a more active, involved lifestyle; she enjoys shopping and cooking for her family, which includes her husband, Garry, and her 17-year-old son, Dakota.

Mrs. Gilreath’s experience with UAB has been great, she says. “It has been the best hospital. I just wish I could have gotten a referral five years ago, when I first got sick.” She also has advice for patients who may have the opportunity to participate in a clinical trial.

“Don’t be scared,” she says. “It could be the best thing that ever happened to you— you might save your life, and you might save another’s life. I was the first one in the U.S. to try that SGN-35 trial, and within seven to eight treatments, I was up walking around like a normal human being. I was going all around the hospital talking to people as a witness, encouraging them to do this trial. Some did, and now there are 14 others participating. SGN-35 was my last choice, and it was left in God’s hands. But I believe that God put doctors here for a reason—and trials, too—so I don’t regret any of it.”

TAB SIX | SURVIVORSHIP 107 patient guide Evelyn Outlaw It was a typical Sunday morning in October 2001 when Evelyn Outlaw’s life abruptly changed. Without any warning, she suffered a gran mal seizure, which caused her to lose consciousness and be rushed to the UAB emergency room.

“I can remember the paramedics saying the seizures were coming back to back,” she recalls. “After that, the details are fuzzy.”

After she arrived at UAB Hospital, Ms. Outlaw had emergency brain surgery, performed by UAB neurosurgeon Barton Guthrie, M.D. The diagnosis was grim—a grade III astrocytoma on the right frontal lobe of her brain. She was only 24 years old.

“My first thought was that I’m too young to die,” she says. “I wondered how anyone could live through a grade III tumor. I still had so much left to do with my life.”

Ms. Outlaw had no family history of cancer, and until her seizure occurred, she had experienced no symptoms of any kind. “I was a typical, independent 24-year-old,” she says. “I had just returned a few months earlier from spending a month by myself backpacking through Europe. It was a complete shock.”

After that shock wore off, Ms. Outlaw turned her attention to her treatment. “I didn’t have a choice about getting cancer, but I had a choice about how to handle it,” she says. “I saw it as a challenge that had been placed in front of me. It was no time to feel sorry for myself.”

Tough Treatments Ms. Outlaw began receiving daily radiation treatments for two months under the care of John Fiveash, M.D., a UAB radiation oncologist and Comprehensive Cancer Center scientist. She took a three-month medical leave from her job with the UAB School of Nursing and began 18 months of chemotherapy with Cancer Center scientist Burt Nabors, M.D.

Chemotherapy proved to be especially difficult for Ms. Outlaw. “I was exhausted all the time,” she says. “For the particular drug I was on, 99 percent of the people who take it tolerate it well and live a normal life. I was part of the other 1 percent. I was sick to the point where I had to be hospitalized for a week to receive my chemotherapy that I was supposed to be able to take at home.

“Every month consisted of me being able to work for two weeks, then be in the hospital for a week, then take about a week to recover from the chemotherapy. I basically had half a life.”

Another difficult aspect of treatment for Ms. Outlaw was the negative effect on her memory, a common

TAB SIX | SURVIVORSHIP 108 patient guide occurrence among brain tumor patients. “I had to write down everything I needed to remember,” she says. “I would tell my friends that I’d do something with them, but when they showed up at my house, I would have completely forgotten. That was tough, because my memory had always been like a steel trap.”

Ms. Outlaw credits the support she received from her friends and family, as well as the staff at the Cancer Center, with helping her meet the challenges of her treatment. Though it was an arduous process, the treatments were a success, and Ms. Outlaw has been cancer-free since July 2003.

New Outlook on Life After her fight with cancer, Ms. Outlaw returned to school. “I had a new perspective on life and knew what it was like to lose one’s independence. I decided it was time for a career change that would allow me to work with people who were struggling to get theirs back,” she says. So she pursued a master’s degree in occupational therapy, which she received from UAB in December 2007. Today Ms. Outlaw works for UAB’s Spain Rehabilitation Center, where she helps patients who have suffered strokes, physical trauma or brain injuries regain their independence in daily activities such as dressing, grooming and feeding themselves.

Though her memory is still not the same as it once was (“I have to use sticky notes for everything!” she says.), Ms. Outlaw, now 31, lives a normal life with her husband, Jeff Elliott. She enjoys traveling, gardening and reading. With an undergraduate degree from UAB in English, she also does freelance editing in her spare time. “Having cancer was not a good experience by any stretch of the imagination, but it was a gift in the sense that I now understand the fragility of life,” Ms. Outlaw says. “I’m very lucky to have survived. I’ve been coming to UAB every day for 13 years—as a student, as an employee, as a patient, you name it. I might not be here today if it were not for UAB.”

Anne Camp Spend just a few minutes with Anne Camp, and you’ll understand how she beat two different kinds of cancer. This wife, mother and grandmother possessed a remarkable spirit and a thirst for life that have helped her overcome daunting odds to join the ranks of cancer survivors.

Mrs. Camp’s first experience with the disease began in 1991, shortly after she and her husband, Bill, moved from their longtime home of Birmingham to Williamsburg, Virginia. “I started feeling tired all the time,” she recalls. “It got to the point where I just felt horrible. I knew something was wrong with me.”

Doctors were not convinced, however, and Mrs. Camp’s condition worsened. Finally her gynecologist figured out the problem—she had stage IV uterine cancer. This type of gynecologic malignancy can be difficult to treat and has a low cure rate, particularly when diagnosed in the later stages, as in Mrs. Camp’s case.

She immediately underwent surgery at the Medical College of Virginia, followed by six months of chemotherapy and another six months of radiation treatments. It was an arduous process for Mrs. Camp. “Chemotherapy is the hardest thing I’ve ever done in my life,” she says; not only did it take a physical toll, but she also found it tough to brace herself mentally for one treatment after another.

TAB SIX | SURVIVORSHIP 109 patient guide “I thought losing my hair would be the hardest thing to go through, but I learned that cancer patients don’t really need hair. It’s just something else to take care of,” she says.

Though the five-year survival rate for uterine cancer diagnosed in stage IV is less than 20 percent, Mrs. Camp beat the odds. She survived the disease, and life returned to normal. After a few years in Virginia, she and her husband returned to Birmingham; Mr. Camp, an architect, began working at UAB, and she continued her career in art, a passion she had pursued since the birth of their first child several years earlier. For the time being, cancer was no longer a part of her life. That was soon to change.

Cancer Returns In 2006, Mrs. Camp began experiencing some colon problems. She was not entirely surprised by this; her sister had suffered similar problems, and her mother had battled colon cancer. With that family history, Mrs. Camp quickly came to the UAB Comprehensive Cancer Center for a sigmoidoscopy.

“At first, the test didn’t find anything,” she says. “But I knew something was wrong and told the doctors to keep looking. Sure enough, there was something there.”

Mrs. Camp was diagnosed with an early stage colon cancer. “This time was a lot easier than the first because it was caught so early,” she says. “I immediately decided that I was going to live because I’m a survivor. It was just there in my mind that I was going to make it through it.”

Mrs. Camp had surgery under the care of Martin Heslin, M.D., Cancer Center scientist and gastrointestinal oncologist. “Dr. Heslin and everyone at UAB were wonderful,” she says. “UAB has some of the best doctors in the world, sitting right here in Birmingham, and they really care about their patients. I’ve had doctors before who wouldn’t even know my name. I was just a number to them, and that was never the case at UAB.”

This time Mrs. Camp did not require any chemotherapy or radiation since the cancer was caught early. She is now cancer-free and returns for follow-up visits with Dr. Heslin as well as Max Austin, M.D., Cancer Center senior scientist and gynecologic oncologist. “I don’t know why I’m still here sometimes,” she says, laughing. “I’m very blessed to be cured.”

Advice for Patients Today, Mrs. Camp still works as an artist, painting whimsical characters and scenes in nurseries and children’s rooms around Birmingham. She and her husband will soon celebrate their 45th wedding anniversary, and she is encouraging him to retire. Once he does, she doesn’t plan to sit still; Mrs. Camp, an avid traveler who has already explored parts of Europe and Africa, has her sights set on a place she has always wanted to visit. “Venice is way up on my list.”

Now that she has survived cancer twice, Mrs. Camp is also eager to help patients who are just beginning the cancer journey by sharing her experiences and what she has learned. “Patients need to know that life is going to change. Sometimes just getting out of a chair is going to be difficult,” she explains. “But as difficult as it is, try to be positive. Try to laugh and heal yourself mentally. That’s so important.”

Mrs. Camp also advises patients to pay attention to themselves. “Know and listen to the signs of your body,” she says. “Learn to be your own advocate.

TAB SIX | SURVIVORSHIP 110 patient guide “I have a theory that a survivor is someone who just makes it through the day and is still there. Personally, I knew to get the best medical care I could get, to stay positive and to have a deep faith. All of that works to bring out the good in your life,” she says. “I honestly consider having cancer to be a blessing. It strengthened my faith in God, and it strengthened our family. There can be good things that come out of illnesses. I don’t want cancer again, but I don’t take what I went through for granted.”

Spring 2011 – Survivor Profile: Dennis Gregg Once a police officer, now a baker, Dennis Gregg is familiar with the bitter and sweet sides of life. But nothing prepared him for the shock of a cancer diagnosis.

Around Birmingham, Dennis Gregg is known as the “Baby Bite Man.” As co- owner with wife Carol of Birmingham’s Pastry Art Bake Shoppe, his famous Baby Bites – along with his cakes, cupcakes and other confections – are a staple at social gatherings across Birmingham.

But there’s another title that Mr. Gregg is proud to wear: prostate cancer survivor. “I’d like to be the prostate cancer survivor poster boy,” he says.

Mr. Greg was just 50 years old in July 1998 when a routine exam during his annual check-up revealed elevated levels of PSA (prostate-specific antigen), which is a warning sign for prostate cancer. His physician sent him to a local urologist, and a biopsy confirmed the worst – he had prostate cancer.

“The first thing I thought was that I was going to die,” Mr. Gregg recalls. “I think that’s what most people first think, because you haven’t done any research or talked to anyone. You’re just hit with the news that you have cancer.”

That piece of news was sobering for Mr. Gregg. “It was the most frightening news I’ve ever had,” he says. “I’m an ex-police officer, so I’ve been through some rough stuff. Nothing compares to hearing that you have cancer, though.”

After his diagnosis, Mr. Gregg immediately set out to gather as much information as he could about his disease. He began exploring his treatment options to determine what would be best for him. He was unhappy with the initial treatment suggestion of his urologist and was looking for a second opinion when a close friend offered him some advice. “He said, ‘You need to come to UAB. It’s a world-class facility, and this is where you need to be,’” Mr. Gregg says.

Laughing and Living Soon after that, Mr. Gregg had an appointment at the UAB Comprehensive Cancer Center with a multidisciplinary team of specialists headed by urologic oncologist Donald Urban, M.D., and radiation oncologist John Fiveash,

TAB SIX | SURVIVORSHIP 111 patient guide M.D. Knowing he had a team of experts treating his cancer was comforting to Mr. Gregg.

“I loved the team approach,” he says. “We were able to sit down and make the best treatment decisions for me based on my circumstances and lifestyle. That was important to me.” Mr. Gregg soon began a four-month course of radiation therapy, followed by a procedure in which radioactive seeds were implanted in the prostate to administer a more gradual dose of radiation. Because of the specifics of his cancer – and because he was in such good physical health prior to being diagnosed – Mr. Gregg did not have to undergo surgery or chemotherapy.

“I had a great response to the treatment,” he says. “I’d come home from treatment and work in the yard. I was already an active person, but I actually increased my exercise level. I didn’t want having cancer to change my lifestyle.”

Another way Mr. Gregg coped with his cancer treatments was through humor. He joked around with Dr. Fiveash and the nurses in radiation oncology. On the last day of his treatment, he emerged from the treatment room wearing his patient gown and his old graduation cap, from which he moved the tassel to the other side of his head to show he was finished with treatment.

“That was a big hit with the nurses,” he recalls, laughing. “But I used a lot of humor because I didn’t want to think about cancer all the time.”

In less than a year after his diagnosis, Mr. Gregg was declared cancer-free and has remained so ever since. “I owe it all to Dr. Urban and Dr. Fiveash. UAB saved my life.”

Looking Ahead Mr. Gregg also credits the support he received from his family in helping him beat caner. That includes his wife of 42 years, Carol, his son, Josh, and daughter, Meg. Today, that family also includes two grandchildren: one who is nine and another who just arrived in February 2011.

He remains grateful to UAB and the Cancer Center - so much so that he was one of the first to sign up to participate in the Cancer Center’s Sweet on a Cure fundraiser when it first launched in 2009. Mr. Gregg encourages those facing cancer to learn as much as they can, do research, talk to their doctor and get a second opinion if necessary. Knowing what to expect and what the challenges are makes a big difference, he says.

As he enters his 13th year of being cancer-free, Mr. Gregg reflects on how cancer changed his life. It put things in perspective for him and in the end, made him a stronger person, he says. “It was a great life experience. Life is full of tragedies, but you make the best of it. It makes you stronger for the next one.”

TAB SIX | SURVIVORSHIP 112 patient guide WHAT LIES AHEAD Many patients find that the experience of being a cancer patient does not stop with the completion of active cancer treatment. With cancer, the term “survivorship” covers the physical, psychosocial, and economic issues of cancer, from diagnosis until the end of life. Cancer survivors have unique health care needs, and Survivorship Care focuses on the health and life of a person with cancer beyond the diagnosis and treatment phases. Survivorship includes issues related to the ability to get health care and follow-up treatment, late effects of treatment, symptom management, second cancers, and quality of life. Family members, friends, and caregivers are also part of the survivorship experience.

While cancer is a major event for all who are diagnosed, it brings with it the opportunity for growth. As hard as treatment can be, many cancer survivors have told us that the experience led them to make important changes in their lives. Many say they now take time to appreciate each new day. They also have learned how to take better care of themselves and value how others care for them. Others draw from their experience to become advocates to improve cancer research, treatment, and care.

What Is “Normal” After Cancer Treatment? Those who have gone through cancer treatment describe the first few months as a time of change. It’s not so much “getting back to normal” as it is finding out what’s normal for you now. People often say that life has new meaning or that they look at things differently now. You can also expect things to keep changing as you begin your recovery.

Your new “normal” may include making changes in the way you eat, the things you do, and your sources of support, all of which are discussed in this booklet.

How Do I Coordinate My Care After Treatment? All cancer survivors should have follow-up care. Knowing what to expect after cancer treatment can help you and your family make plans, lifestyle changes, and important decisions.

Some common questions you may have are:

• Should I tell the doctor about symptoms that worry me? • Which doctors should I see after treatment? • How often should I see my doctor? • What tests do I need? • What can be done to relieve pain, fatigue, or other problems after treatment? • How long will it take for me to recover and feel more like myself? • Is there anything I can or should be doing to keep cancer from coming back? • Will I have trouble with health insurance? • Are there any support groups I can go to?

TAB SIX | SURVIVORSHIP 113 patient guide Coping with these issues can be a challenge. Yet many say that getting involved in decisions about their medical care and lifestyle was a good way for them to regain some of the control they felt they lost during cancer treatment. Research has shown that people who feel more in control feel and function better than those who do not. Being an active partner with your doctor and getting help from other members of your health care team is the first step.

Once you have finished your cancer treatment, you should receive a follow-up cancer care plan. Follow-up care means seeing a doctor for regular medical checkups. Your follow-up care depends on the type of cancer and type of treatment you had, along with your overall health. It is usually different for each person who has been treated for cancer. One step you can take as an active partner in your care is to ensure that you have recorded somewhere the cancer treatments that you received, and any difficulties you experienced with them.

In general, survivors usually return to the doctor every 3 to 4 months during the first 2 to 3 years after treatment, and once or twice a year after that. At these visits, your doctor will look for side effects from treatment and check if your cancer has returned (recurred) or spread (metastasized) to another part of your body. At these visits, your doctor will:

• Review your medical history

• Give you a physical exam

Your doctor may run follow-up tests such as:

• Blood tests

• MRI or CT scans. These scans take detailed pictures of areas inside the body at different angles.

• Endoscopy (en-DOSS-koh-pee). This test uses a thin, lighted tube to examine the inside of the body.

At your first follow-up visit, talk with your doctor about your follow-up care plan. Be sure to give any new doctors that you see a copy of your treatment summary or medical records.

Which Doctor Should I See Now? How Often? You will need to decide which doctor will provide your follow-up cancer care and which one(s) you will see for other medical care. For follow-up cancer care, this may be the same doctor who provided your cancer treatment. For regular medical care, you may decide to see your main provider, such as a family doctor. For specific concerns, you may want to see a specialist. This is a topic you can discuss with your doctors. They can help you decide how to make transitions in care.

Depending on where you live, it may make more sense to get follow-up cancer care from your family doctor, rather than your oncologist. It’s important to note that some insurance plans pay for follow-up care only with certain doctors and for a set number of visits.

In coming up with your schedule, you may want to check your health insurance plan to see what follow-up care it allows. No matter what your health coverage situation is, try to find doctors you feel comfortable with.

TAB SIX | SURVIVORSHIP 114 patient guide Always tell any new doctors you see about your history of cancer. The type of cancer you had and your treatment can affect decisions about your care in the future. They may not know about your cancer unless you tell them.

A Survivor’s Wellness Plan After cancer treatment, many survivors want to find ways to reduce the chances of their cancer coming back. Some worry that the way they eat, the stress in their lives, or their exposure to chemicals may put them at risk. Cancer survivors find that this is a time when they take a good look at how they take care of themselves. This is an important start to living a healthy life.

When you meet with your doctor about follow-up care, you should also ask about developing a wellness plan that includes ways you can take care of your physical, emotional, social, and spiritual needs. If you find that it’s hard to talk with your doctor about these issues, it may be helpful to know that the more you do it, the easier it becomes. And your doctor may suggest other members of the health care team for you to talk with, such as a social worker, clergy member, or nurse.

Changes You May Want to Think About Making Quit smoking. Research shows that smoking can increase the chances of getting cancer at the same site or another site.

Cut down on how much alcohol you drink. Research shows that drinking alcohol increases your chances of getting certain types of cancers.

Eat well. Healthy food choices and physical activity may help reduce the risk of cancer or recurrence. Talk with your doctor or a nutritionist to find out about any special dietary needs that you may have. The American Cancer Society and the American Institute for Cancer Research have developed similar diet and fitness guidelines that may help reduce the risk of cancer:

• Eat a plant-based diet and have at least 5-9 servings of fruit and vegetables daily. Try to include beans in your diet, and eat whole grains (such as cereals, breads, and pasta) several times daily. • Choose foods low in fat and low in salt. • Get to and stay at a healthy weight.

Exercise and stay active. Several recent reports suggest that staying active after cancer can help lower the risk of recurrence and can lead to longer survival. Moderate exercise (walking, biking, swimming) for about 30 minutes every, or almost every day • Reduce anxiety and depression • Improve mood and boost self-esteem • Reduce fatigue, nausea, pain, and diarrhea

It is important to start an exercise program slowly and increase activity over time, working with your doctor or a specialist (such as a physical therapist) if needed. If you need to stay in bed during your recovery, even small activities like stretching or moving your arms or legs can help you stay flexible, relieve muscle tension, and help you feel better. Some people may need to take special care in exercising. Talk with your doctor before you begin any exercise program.

Cite: the Web site of the National Cancer Institute (http://www.cancer.gov)

TAB SIX | SURVIVORSHIP 115 patient guide UAB Services to Think About Talk with your doctor to help you locate services such as these:

Couples Counseling You and your partner work with trained specialists who can help you talk about problems, learn about each other’s needs, and find ways to cope. Counseling may include issues related to sex and intimacy.

Faith or Spiritual Counseling Some members of the clergy are trained to help you cope with cancer concerns, such as feeling alone, fear of death, searching for meaning, and doubts about faith.

Family Support Programs Your whole family may be involved in the healing process. In these programs, you and your family members take part in therapy sessions with trained specialists who can help you talk about problems, learn about each other’s needs, and find answers.

Genetic Counseling Trained specialists can advise you on whether to have genetic testing for cancer and how to deal with the results. It can be helpful for you and for family members who have concerns about their own health.

Home Care Services State and local governments offer many services that you may find useful after cancer treatment. For example, a nurse or physical therapist may be able to come to your home. You may also be able to get help with housework or cooking. Check the phone book under the categories Social Services, Health Services, or Aging Services.

Individual Counseling Trained mental health specialists can help you deal with your feelings, such as anger, sadness, and concern for your future.

Supportive Care and Survivors Clinic All doctors can offer follow-up care, but there are also clinics that specialize in long-term follow-up after cancer. The UAB Supportive Care and Survivorship Clinic offers many of the services listed here for cancer patients, survivors, and their families.

Nutritionists/Dietitians They can help you with gaining or losing weight and with healthy eating.

Occupational Therapists They can help you regain, develop, and build skills that are important for day-to-day living. They can help you relearn how to do daily activities, such as bathing, dressing, or feeding yourself, after cancer treatment.

For more information on the specialties and programs that can help you with the transition from treatment into survivorship, please ask your doctor or call our Supportive Care and Survivors Clinic at (205) 801-8624.

TAB SIX | SURVIVORSHIP 116 patient guide Taking on Life After Cancer - Childhood Cancer Survivorship Clinic The news for those facing childhood cancer continues to get better and better. Due to improvements in treatment strategies and supportive care, the overall cure rate for childhood cancers is approaching 80%. This has led to a growing number of childhood cancer survivors who may face unique challenges in the future. Today, there are over a quarter of a million childhood cancer survivors in the United States. It is estimated that 1 out of every 570 young adults age 20-39 years is a survivor of a childhood or adolescent malignancy. This number is anticipated to continue to grow.

With the success of treating childhood cancer there has developed an emphasis to learn more about the unique needs of survivors. There has been much research into this new field. Here at the University of Alabama at Birmingham/the Children’s of Alabama’s Taking on Life After Cancer (TLC) clinic, we understand that individuals who have completed treatment and are at low risk for recurrence of their disease require specialized care in a clinic designed to focus on survivorship issues. We are devoted to learning more about childhood cancer survivors and helping them enjoy full, successful lives.

The TLC clinic was established in 2004 to improve the health and well-being of childhood cancer survivors. We are the only comprehensive clinic in Alabama designed specifically for survivors. Our goals include:

• Informing survivors and families about the specifics of their diagnosis and therapy. • Educating survivors, families, and healthcare professionals about the long term effects of cancer treatment. • Performing screening for late effects based on the treatments the patients received. • Providing psychosocial evaluation and support. • Providing referrals to specialists when needed. • Monitoring and treating late effects of childhood cancer treatments.

Over the years, we have learned that many survivors of childhood and adolescent cancer are at risk for developing physical or psychological effects related to their cancer and its treatment. The chemotherapy drugs, radiation, and surgery used to provide a cure may lead to “late effects.” These late effects may include:

• Endocrine issues (impaired growth, fertility problems, hormonal imbalances, osteoporosis); • Heart problems; • Lung problems; • Secondary cancers (leukemias, skin cancer, breast cancer, bone tumors); • Neurocognitive problems (learning disabilities, memory loss); • Psychological problems (depression, anxiety); • Dental problems

TAB SIX | SURVIVORSHIP 117 patient guide HOW TO GIVE BACK/GET INVOLVED WITH UAB’S CANCER COMMUNITY Provide a Gift There are many ways to give to the UAB Comprehensive Cancer Center. Gifts can help us immediately address the obstacles that stand in the way of a cure. Gifts also give donors an opportunity to see the results of their giving in their lifetimes. Additionally, making a gift to fund cancer research or establishing an endowment is a wonderful way to honor a loved one’s memory.

Fund for Excellence Gifts that are not directed by the donor to a particular area or fund are placed into the Fund for Excellence (FFE) to support the UAB Comprehensive Cancer Center’s highest-priority projects.

Your gift to the FFE will fight cancer and help to advance the translation of scientific discovery into new treatments for patients by supporting the promising research of young investigators and attracting the world’s best physician-scientists to UAB. You will also help to provide educational and supportive services to cancer patients and their families.

Patient Assistance The UAB Comprehensive Cancer Center strives to provide every patient with the most pleasant and comfortable experience as possible during their cancer treatment. Our Patient and Family Services programs provide everything from coffee in clinic waiting rooms to assistance with medications and bills to temporary housing for out-of-town patients.

When you make a donation to Patient and Family Services, 100 percent of your gift will stay here at UAB and go directly toward helping cancer patients and their families.

Research When you give to the UAB Comprehensive Cancer Center, 100 percent of your money stays right here in Birmingham and is applied directly toward cancer research. You can donate directly to a specific area of cancer research by clicking the links below.

UAB Pediatric Hematology Oncology Clinic Your support is greatly needed. Please let us know how you would like to help us continue to make miracles happen for ill and injured children. These are just some of the ways our donors have supported the Hospital. Let us know if you have a creative support idea that is not listed. To donate online, please use the convenient and secure online donation form: http://foundation.childrensal.org/workfiles/foundation/donationformforweb.pdf

TAB SIX | SURVIVORSHIP 118 patient guide Become a Comprehensive Cancer Center Ambassador Volunteer Community support is vital to the future of the UAB Comprehensive Cancer Center. Whether time or money, your contribution counts. If you are interested in volunteering your time and talent, there are many opportunities to help. You can become an Ambassador volunteer who can make a difference in the lives of our patients.

Special Event Volunteers Fundraising initiatives are instrumental in providing support for cancer research and the patient services we offer. UAB’s Comprehensive Cancer Center is looking for volunteers to help in the Development Office with fundraising efforts and events.

Administrative Support Volunteers: Volunteers have the opportunity to provide administrative support in various oncology treatment areas. This support helps lessen workload burden for healthcare professionals so that they can focus on patient care. Volunteers may greet and accompany patients to treatment rooms and provide administrative support such as preparing documents and spreadsheets as well as organizing files, copying, preparing new patient packets, mailings, etc.

Care and Comfort Volunteers: Volunteers in our oncology treatment areas provide a warm and welcoming presence for patients and their families and attend to patients’ comfort needs. Volunteers provide refreshments and engage in friendly conversation with patients and their families.

Patient Education: Volunteers are trained to help teach our weekly patient orientation program where patients and families can learn about effectively communicating with healthcare providers, managing treatment, getting reliable information, navigating the UAB campus and finding support for a cancer journey.

For information on gift options including endowments, charitable annuities, trusts, bequests and other forms of planned giving, please contact (205) 934-6326. To find out more about volunteering, contact (205) 996-5364.

TAB SIX | SURVIVORSHIP 119 patient guide TAB SEVEN GLOSSARY OF CANCER TERMS GLOSSARY OF CANCER TERMS Abdomen: the area of the body that contains the pancreas, stomach, intestine, liver, gallbladder and other organs.

Adjuvant chemotherapy: one or more anti-cancer drugs used in combination with surgery or radiotherapy.

Adjuvant therapy: treatment given after the primary treatment to increase the chances of a cure. Adjuvant therapy may include chemotherapy, radiation therapy, hormone therapy or biological therapy.

Alopecia: hair loss.

Anemia: having too few red blood cells. Symptoms of anemia include feeling tired, weak and short of breath.

Anesthesia: drugs or substances that cause loss of feeling or awareness. Local anesthetics cause loss of feeling in a part of the body. General anesthetics put the person to sleep.

Antibody: a protein produced by the lymph system or bone marrow. It helps the body mount an attack against invaders such as viruses and bacteria.

Antiemetic: a medicine that prevents or controls nausea and vomiting.

Antigen: a substance that stimulates the production of antibodies by the immune system. They may be bacteria, viruses, pollen, etc.

Barium enema: a procedure in which a liquid with barium is put into the rectum and colon by way of the anus. Barium is a silver-white metallic compound that helps to show the image of the lower gastrointestinal tract on an x-ray.

Benign: not cancerous. Benign tumors do not spread to tissues around them or to other parts of the body.

120 Biological therapy: treatment to stimulate or restore the ability of the immune system to fight infections and other diseases. Also used to lessen side effects that may be caused by some cancer treatments. Also known as immunotherapy, biotherapy or biological response modifier therapy.

Biopsy: the removal of cells or tissues for examination under a microscope. When only a sample of tissue is removed, the procedure is called an incisional biopsy or core biopsy.

Blood Count: a measurement of the number of red cells, white cells and platelets in the blood.

Bone marrow: the inner, spongy core of the bone that produces blood cells.

Bone marrow transplantation: a procedure in which doctors replace bone marrow destroyed by treatment with high doses of anti-cancer drugs or with radiation. The replacement marrow may be taken from the patient before treatment, or may be donated by another person. When the patient’s own marrow is used, the procedure is called autologous bone marrow transplantation. When marrow is used donated from another person, the procedure is called allogeneic bone marrow transplantation.

Brachytherapy: a procedure in which radioactive material sealed in needles, seeds, wires or catheters is placed directly into or near a tumor. Also called internal radiation, implant radiation or interstitial radiation therapy.

Cancer: a group of diseases in which abnormal cells divide without control. Cancer cells can invade nearby tissue and can spread through the bloodstream and lymphatic system to other parts of the body.

Carcinogen: a substance or agent that is known to cause cancer.

Catheter: a thin, plastic tube. When a catheter is placed in a vein, it provides a pathway for drugs, nutrients or blood products. Blood samples also can be removed through a catheter.

Central nervous system: also called the CNS, this system is made up of the brain and spinal cord.

Central venous catheter: a special thin, flexible tube placed in a large vein. It remains there for as long as needed to deliver and withdraw fluids.

Cerebrospinal fluid: also called CSF. The fluid flowing around the brain and spinal cord. Cerebrospinal fluid is produced in the ventricles in the brain.

Clinical trial: a type of research study that tests how well new medical treatments, medications or other interventions work in people. Such studies test new methods of screening, prevention, diagnosis or treatment of a disease. The study may be carried out in a clinic or other medical facility. Also called a clinical study.

TAB SEVEN | GLOSSARY OF CANCER TERMS 121 patient guide Colonoscope (ko-LAHN-o-skope): a thin, lighted tube used to examine the inside of the colon. Colony-stimulating factors: substances that stimulate the production of blood cells. Treatment with colony- stimulating factors can help the blood-forming tissue recover from the effects of chemotherapy and radiation therapy. These include granulocyte colony-stimulating factors (G-CSF) and granulocyte-macrophage colony- stimulating factors (GM-CSF).

Combination chemotherapy: the use of more than one drug to treat cancer.

Computed tomography (CT): CT scan. A series of detailed pictures of areas inside the body taken from different angles; the pictures are created by a computer linked to an x-ray machine. Also called computerized tomography and computerized axial tomography (CAT) scan.

Digital rectal examination: DRE. An examination in which a doctor inserts a lubricated, gloved finger into the rectum to feel for abnormalities.

Diuretics: drugs that help the body get rid of excess water and salt.

Dysplasia (dis-PLAY-zha): cells that abnormal under a microscope but are not cancer.

Endoscopy (en-DAHS-ko-pee): the use of a thin, lighted tube (called an endoscope) to examine the inside of the body.

Estrogen: a female hormone.

Excisional biopsy: a surgical procedure in which an entire lump or suspicious area is removed for diagnosis. The tissue is then examined under a microscope.

External radiation: radiation therapy that uses a machine to aim high-energy rays at the cancer. Also called external-beam radiation.

Fecal occult blood test: a test to check for hidden blood in the stool.

Fertility (fer-TIL-i-tee): the ability to produce children.

Gastrointestinal: the digestive tract, which includes the mouth, esophagus, stomach and intestines.

Gene: the functional and physical unit of heredity passed from parent to offspring. Genes are pieces of DNA, and most genes contain the information for making a specific protein.

Gene therapy: treatment that alters genes. In early studies of gene therapy for cancer, researchers try to improve the body’s natural ability to fight the disease or to make the tumor more sensitive to other kinds of therapy.

TAB SEVEN | GLOSSARY OF CANCER TERMS 122 patient guide Graft-versus-host disease: also called GVHD. A reaction of donated bone marrow or peripheral stem cells against the recipient’s tissue.

Hormone therapy: treatment that adds, blocks, or removes hormones. For certain conditions (such as diabetes or menopause), hormones are given to adjust low hormone levels. To slow or stop the growth of certain cancers (such as prostate and breast cancer), synthetic hormones or other drugs may be given to block the body’s natural hormones. Sometimes surgery is needed to remove the gland that makes hormones. Also called hormonal therapy, hormone treatment or endocrine therapy.

Hormones: chemicals produced by glands in the body. Hormones control the actions of certain cells or organs.

Hysterectomy (hiss-ter-EK-toe-mee): an operation in which the uterus is removed.

Imaging: procedures that produce pictures of areas inside the body.

Immune system: the complex group of organs and cells that defend the body against infections and other diseases.

Immunotherapy: treatment to stimulate or restore the ability of the immune system to fight infections and other diseases. Also used to lessen side effects that may be caused by some cancer treatments. Also known as biological therapy, biotherapy or biological response modifier (BRM) therapy.

Impotence: inability to have an erection.

Incisional biopsy: a surgical procedure in which a portion of a lump or suspicious area is removed for diagnosis. The tissue is then examined under a microscope.

Infertility: the inability to produce children.

Infusion: slow and/or prolonged intravenous delivery of a drug or fluids.

Injection: using a syringe and needle to push fluids or drugs into the body; often called a “shot.”

Interferon (in-ter-FEER-on): a biological response modifier (a substance that can improve the body’s natural response to infections and other diseases). Interferons hinder the division of cancer cells and can slow tumor growth. There are several types of interferons, including interferon-alpha, -beta and -gamma. The body normally produces these substances. They are also made in the laboratory to treat cancer and other diseases.

Internal radiation: a procedure in which radioactive material sealed in needles, seeds, wires or catheters is placed directly into or near a tumor. Also called brachytherapy, implant radiation or interstitial therapy.

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Intraperitoneal chemotherapy: treatment in which anticancer drugs are put directly into the abdominal cavity through a thin tube.

Intrathecal chemotherapy: anticancer drugs are injected into the fluid-filled space between the thin layers of tissue that cover the brain and spinal cord.

IV: intravenous therapy. Injected into a blood vessel.

Leukemia (loo-KEE-mee-a): cancer that starts in blood-forming tissue such as the bone marrow, and causes large numbers of blood cells to be produced and enter the blood stream.

Local treatment: treatment that affects the tumor and the area close to it, but does not travel through the body.

Lymph: an almost colorless fluid that travels through the lymphatic system and carries cells that help fight infection and disease.

Lymph nodes: small, bean-shaped organs located along the channels of the lymphatic system. Bacteria or cancer cells that enter the lymphatic system may be found in the nodes. Also called the lymph glands.

Lymphatic system: the tissues and organs that produce, store and carry white blood cells that fight infections and other diseases. This system includes the bone marrow, spleen, thymus, lymph nodes and lymphatic vessels (a network of thin tubes that carry lymph and white blood cells). Lymphatic vessels branch, like blood vessels, into all the tissues of the body.

Lymphoma (lim-FO-ma): cancer that begins in cells of the immune system. There are two basic categories of lymphomas. One kind is Hodgkin’s lymphoma, which is marked by the presence of a type of cell called the Reed-Sternberg cell. The other category is non-Hodgkin’s lymphomas, which includes a large, diverse group of cancers of immune system cells. Non-Hodgkin’s lymphomas can be further divided into cancers that have an indolent (slowly progressing) course and those that have an aggressive (rapidly progressing) course. These subtypes behave and respond to treatment differently. Both Hodgkin’s and non-Hodgkin’s lymphomas can occur in children and adults, and prognosis and treatment depend on the stage and the type of cancer.

Malignant: cancerous. Malignant tumors can invade and destroy nearby tissue and spread to other parts of the body.

Mammogram: an x-ray of the breast.

Medical oncologist: a doctor who specializes in diagnosing and treating cancer using chemotherapy, hormonal therapy and biological therapy. A medical oncologist often is the main person who provides direct care for someone who has cancer and who coordinates treatment provided by other specialists.

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Metastasis: the spread of cancer from one part of the body to another. A tumor formed from the cells that have spread is called a secondary tumor, a metastatic tumor or a metastasis. The secondary tumor contains cells that are like those in the original (primary) tumor. The plural form of metastasis is metastases.

Monoclonal antibodies: substances that can locate and bind to cancer cells wherever they are in the body. They can be used alone, or they can be used to deliver drugs, toxins or radioactive material directly to the tumor cells.

MRI: magnetic resonance imaging. A procedure in which radio waves and a powerful magnet linked to a computer are used to create detailed pictures of areas inside the body. These pictures can show the difference between normal and diseased tissue. MRI makes better images of organs and soft tissue than other scanning techniques, such as CT or x-ray. MRI is especially useful for imaging the brain, spine, the soft tissue of joints and the inside of bones. Also called nuclear magnetic resonance imaging. Mucositis/Stomatitis: sores on the lining of the mouth.

Mutation: any change in the DNA of a cell. Mutations may be caused by mistakes during cell division, or they may be caused by exposure to DNA-damaging agents in the environment. Mutations can be harmful, beneficial or have no effect. If they occur in cells that make eggs or sperm, they can be inherited; if mutations occur in other types of cells, they are not inherited. Certain mutations may lead to cancer or other diseases.

Neoadjuvant therapy: treatment given before the primary treatment. Examples of neoadjuvant therapy include chemotherapy, radiation therapy and hormone therapy.

Palliative care: treatment to relieve, rather than cure, symptoms caused by cancer. Palliative care can help people live more comfortably.

Pathologist: a doctor who identifies diseases by studying cells and tissues under a microscope.

Pelvis: the lower part of the abdomen, located between the hip bones.

Peripheral stem cell transplantation: a method of replacing blood-forming cells destroyed by cancer treatment. Immature blood cells (stem cells) in the circulating blood that are similar to those in the bone marrow are given to the patient after treatment. This helps the bone marrow recover and continue producing healthy blood cells. Transplantation may be autologous (an individual’s own blood cells saved earlier), allogeneic (blood cells donated by someone else), or syngeneic (blood cells donated by an identical twin). Also called peripheral stem cell support.

Progesterone: a female hormone.

Prognosis: the likely outcome or course of a disease; the chance of recovery or recurrence.

TAB SEVEN | GLOSSARY OF CANCER TERMS 125 patient guide Radiation oncologist: a doctor who specializes in using radiation to treat cancer. Radiation therapy: the use of high-energy radiation from x-rays, gamma rays, neutrons and other sources to kill cancer cells and shrink tumors. External radiation therapy is the use of a machine to aim high-energy rays at the cancer. Internal radiation therapy is the placement of radioactive material inside the body as close as possible to the cancer.

Radioactive: giving off radiation.

Radionuclide scanning: an exam that produces pictures of the inside of the body. The patient is given an injection or swallows a small amount of radioactive material. A machine called a scanner then measures the radioactivity in certain organs.

Recur: to occur or happen again.

Regression: the state of growing smaller or disappearing; used to describe the shrinkage or disappearance of a cancer.

Remission: the disappearance of the signs and symptoms of cancer. When this happens, the disease is said to be “in remission.” Remission may be temporary or permanent.

Risk factor: something that may increase the chances of developing a disease. Some examples of risk factors for cancer include age, a family history of certain cancers, use of tobacco products, certain eating habits, obesity, exposure to radiation or other cancer-causing agents, and certain genetic changes.

Screening: checking for disease when there are no symptoms.

Side effects: problems that occur when treatment effects healthy cells. Common side effects of cancer treatment are fatigue, nausea, vomiting, decreased blood cell counts, hair loss and mouth sores.

Sigmoidoscope (sig-MOY-da-skope): a thin, lighted tube used to view the inside of the colon.

Sperm banking: freezing sperm before cancer treatment for use in the future. This procedure may allow men to father children after loss of fertility.

Stage: the extent of a cancer within the body. If the cancer has spread, the stage describes how far it has spread from the original site to other parts of the body.

Staging: performing exams and tests to learn the extent of the cancer within the body, especially whether the disease has spread from the original site to other parts of the body. It is important to know the stage of the disease in order to plan the best treatment.

TAB SEVEN | GLOSSARY OF CANCER TERMS 126 patient guide Stomatitis/Mucositis: sores on the lining of the mouth. Subcutaneous (SQ or SC): under the skin, usually said in reference to a shot given under the skin.

Surgery: a procedure to remove or repair a part of the body or to find out whether disease is present; an operation.

Systemic therapy: treatment using substances that travel through the bloodstream, reaching and affecting cells all over the body.

Systemic treatment: treatment that reaches cells all over the body by traveling through the blood stream.

Tissue: a group or layer of cells that are alike and that work together to perform a specific function.

Tumor: an abnormal mass of tissue that results from excessive cell division. Tumors perform no useful body function. They may be benign (not cancerous) or malignant (cancerous).

Tumor markers: substances found in abnormal amounts in the blood, in other body fluids or in tumor tissue of some patients with certain types of tumors.

Ultrasonography: a procedure in which high-energy sound waves (ultrasound) are bounced off internal tissues or organs and make echoes. The echoes form a picture of body tissues called a sonogram. Also called ultrasound.

Ultraviolet radiation (ul-tra- VYE-o-let ray-dee-AY-shun): UV radiation. Invisible rays that are part of the energy that comes from the sun. UV radiation also comes from sun lamps and tanning beds. UV radiation can damage the skin and cause melanoma and other types of skin cancer. UV radiation that reaches the Earth’s surface is made up of two types of rays, called UVA and UVB rays. UVB rays are more likely than UVA rays to cause sunburn, but UVA rays pass deeper into the skin. Scientists have long thought that UVB radiation can cause melanoma and other types of skin cancer. They now think that UVA radiation also may add to skin damage that can lead to skin cancer and cause premature aging. For this reason, skin specialists recommend that people use sunscreens that reflect, absorb or scatter both kinds of UV radiation.

White blood cell (WBC): refers to a blood cell that does not contain hemoglobin. White blood cells include lymphocytes, neutrophils, eosinophils, macrophages and mast cells. These cells are made by bone marrow and help the body fight infection and other diseases.

X-ray: a type of high-energy radiation. In low doses, x-rays are used to diagnose diseases by making pictures of the inside of the body. In high doses, x-rays are used to

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