1 DIAGNOSIS & TREATMENT DIAGNOSIS

STAGE III & STAGE IV COLORECTAL CANCER YOUR GUIDE IN THE FIGHT

If you have recently been diagnosed with stage III or IV colorectal cancer (CRC), or have a loved one with the disease, this guide will give you invaluable information about how to interpret the diagnosis, realize your treatment options, and plan your path. You have options, and we will help you navigate the many decisions you will need to make.

Your Guide in the Fight is a three-part book designed to empower and point you towards trusted, credible resources.

Your Guide in the Fight offers information, tips, and tools to: DISCLAIMER • Navigate your cancer treatment The information and services provided by Fight Colorectal Cancer are for • Gather information for treatment general informational purposes only and are not intended to be substitutes for • Manage symptoms professional medical advice, diagnoses, • Find resources for personal or treatment. If you are ill, or suspect strength, organization and support that you are ill, see a doctor immediately. In an emergency, call 911 or go to • Manage details from diagnosis the nearest emergency room. Fight to survivorship Colorectal Cancer never recommends or endorses any specific physicians, products, or treatments for any condition.

FIGHT COLORECTAL CANCER LOOK FOR THE ICONS We FIGHT to cure colorectal cancer and serve as relentless champions of hope Tips and Tricks for all affected by this disease through informed patient support, impactful policy change, and breakthrough Additional Resources research endeavors. More information can be found on another page or part

COVER: Lauren Tatum | Stage IV survivor DIAGNOSIS & TREATMENT 1

PAGE • TABLE OF CONTENTS 3 • Stage III and Stage IV Colorectal Cancer 7 • Understanding Your Diagnosis 11 • Talking to the Right People 17 • Finding Reliable Information on the Internet 21 • Understanding Your Treatment Options

WHAT YOU WILL KNOW AFTER READING PART 1 • MY DIAGNOSIS • WHO IS ON MY TREATMENT TEAM • MY POTENTIAL TREATMENT OPTIONS • USEFUL ONLINE RESOURCES

PHOTO: Mike Rozell | Stage III survivor 1 Colorectal cancer (CRC) is the term encompassing both colon and rectal cancers.

2 • Your Guide In The Fight • Part 1 • STAGE III & STAGE IV COLORECTAL CANCER 1

Colorectal cancer occurs when abnormal cells form tumors in tissues of the intestines and digestive system.

THE EXACT TYPE OF waste. This may cause that cancer cells spread colon or rectal cancer potentially severe bowel to lymph nodes. Stage found depends on where and abdominal problems. IV colorectal cancer the abnormal cells first (also called late-stage or began and how fast they At first, the tumor is metastatic CRC) means the grew and spread. Colorectal contained within the cancer is advanced, and cancer (CRC) is the term colon or rectum. This is cancer cells have spread encompassing both cancer called local CRC. Over time, (metastasized) to form types. CRC may have no cancerous cells may move tumors in other areas symptoms at first, but as to nearby lymph nodes, of the body, such as the the tumor grows it can and then to other parts liver or lungs. disrupt the body’s ability of the body. Stage III to digest food and remove colorectal cancer means

• Diagnosis & Treatment • 3 1 WHAT IS STAGE III AND STAGE IV COLORECTAL CANCER · continued

COLORECTAL CANCER TERMS

• Colon Cancer is cancer that starts • Cancer Staging is a process that in the colon. It is sometimes called determines the extent that the cancer bowel cancer has grown or spread. A person’s cancer stage at diagnosis will affect • Rectal Cancer is cancer that forms their treatment plan in the tissues of the rectum (the last five to six inches of the large intestine • Computed Tomography (CT) Scan closest to the anus) is a test which shows far more detail than a typical X-ray, allows doctors • Metastatic Colorectal Cancer is to see inside your body with the use cancer that spread beyond its original of X-rays and a computer location in the colon or rectum • Positron Emission Tomography • Recurrent Cancer is cancer that (PET) Scan is a test that allows your returned after being diagnosed doctor to look for diseases in your and treated body using a special dye containing • Lymph Nodes are small, bean-shaped radioactive tracer structures found throughout the • Magnetic Resonance Imaging (MRI) body that filter substances in a fluid scan makes detailed pictures of the called lymph to help fight infection inside of your body through the use and disease of powerful magnets, radio waves, and a computer

PRE-CANCER CANCER

adenocarcinoma

ademomatous polyps dysplasia invasive cancer benign abnormal cell polyp growth

LOW RISK MEDIUM RISK HIGH RISK

4 • Your Guide In The Fight • Part 1 • Colorectal Cancer Stages

Stage Stage Description

The cancer is in its earliest stage. This stage is also known as carcinoma in situ or intramucosal carcinoma 0 (Tis). It has not grown beyond the inner layer (mucosa) of the colon or rectum.

The cancer has grown through the muscularis mucosa into the submucosa (T1), and it may also have grown I into the muscularis propria (T2). It has not spread to nearby lymph nodes (N0) or to distant sites (M0).

The cancer has grown into the outermost layers of the colon or rectum, but has not gone through them (T3). IIA It has not reached nearby organs and has not spread to nearby lymph nodes (N0) or to distant sites (M0).

The cancer has grown through the wall of the colon or rectum, but has not grown into other nearby tissues IIB or organs (T4a). It has not yet spread to nearby lymph nodes (N0) or to distant sites (M0).

The cancer has grown through the wall of the colon or rectum and is attached to, or has grown into other IIC nearby tissues or organs (T4b). It has not yet spread to nearby lymph nodes (N0) or to distant sites (M0).

The cancer has grown through the mucosa into the submucosa (T1), and it may also have grown into the muscularis propria (T2). It has spread to one to three nearby lymph nodes (N1) or into areas of fat near the lymph nodes but not the nodes themselves (N1c). It has not spread to distant sites (M0). IIIA or The cancer has grown through the mucosa into the submucosa (T1). It has spread to 4 to 6 nearby lymph nodes (N2a). It has not spread to distant sites (M0).

The cancer has grown into the outermost layers of the colon or rectum (T3) or through the visceral peritoneum (T4a) but has not reached nearby organs. It has spread to 1 to 3 nearby lymph nodes (N1a or N1b) or into areas of fat near the lymph nodes, but not the nodes themselves (N1c). It has not spread to distant sites (M0). or The cancer has grown into the muscularis propria (T2) or into the outermost layers of the colon or rectum IIIB (T3). It has spread to four to six nearby lymph nodes (N2a). It has not spread to distant sites (M0). or The cancer has grown through the mucosa into the submucosa (T1), and it may also have grown into the muscularis propria (T2). It has spread to 7 or more nearby lymph nodes (N2b). It has not spread to distant sites (M0).

The cancer has grown through the wall of the colon or rectum (including the visceral peritoneum) but has not reached nearby organs (T4a). It has spread to 4 to 6 nearby lymph nodes (N2a). It has not spread to distant sites (M0). or The cancer has grown into the outermost layers of the colon or rectum (T3) or through the visceral IIIC peritoneum (T4a), but has not reached nearby organs. It has spread to seven or more nearby lymph nodes (N2b). It has not spread to distant sites (M0). or The cancer has grown through the wall of the colon or rectum and is attached to, or has grown into, other nearby tissues or organs (T4b). It has spread to at least one nearby lymph node or into areas of fat near the lymph nodes (N1 or N2). It has not spread to distant sites (M0).

The cancer may or may not have grown through the wall of the colon or rectum (Any T). It might or might not IVA have spread to nearby lymph nodes. (Any N). It has spread to one distant organ (such as the liver or lung) or distant set of lymph nodes, but not to distant parts of the peritoneum (the lining of the abdominal cavity) (M1a).

The cancer might or might not have grown through the wall of the colon or rectum (Any T). It might or might not IVB have spread to nearby lymph nodes (Any N). It has spread to more than one distant organ (such as the liver or lung) or distant set of lymph nodes, but not to distant parts of the peritoneum (the lining of the abdominal cavity) (M1b).

The cancer might or might not have grown through the wall of the colon or rectum (Any T). It might or IVC might not have spread to nearby lymph nodes (Any N). It has spread to distant parts of the peritoneum (the lining of the abdominal cavity), and may or may not have spread to distant organs or lymph nodes (M1c).

Source: American Cancer Society - https://www.cancer.org/cancer/colon-rectal-cancer/detection-diagnosis-staging/staged.html

• Diagnosis & Treatment • 5 6 • Your Guide In The Fight • Part 1 • UNDERSTANDING YOUR DIAGNOSIS 2

You may feel a range of emotions after a cancer diagnosis, including pressure to begin treatment immediately. However, there are steps you and your doctor must take before starting treatment.

STAGING IS AN IMPORTANT PART of Doctors will conduct a biopsy (a surgical your diagnosis, prognosis, and treatment procedure to remove tumor cells) so a planning. Once established, your cancer pathologist can determine whether or not stage will stay the same, even if the the cells appear normal. cancer progresses (continues to grow) Testing your tumor for biomarkers recurs (comes back) or is in remission (so you can “know your tumor type”) may (no evidence of disease). help you understand if there are abnormal cell functions. Biomarker testing (also Your doctor will assign a clinical stage called tumor or genomic testing) may to your cancer based on blood tests and provide insight into prognosis (outlook scans, in addition to your medical history or chance of recovery from CRC) and can and physical exam. help to predict your cancer’s response to a specific treatment. Biomarker testing • Blood tests to look for certain enzymes helps guide treatment recommendations and decisions. • Diagnostic scans, such as CT, MRI, and PET scans to show where the cancer More information on biomarker testing is located can be found on pages 26-27.

• Diagnosis & Treatment • 7 2 UNDERSTANDING YOUR DIAGNOSIS · continued

During the initial diagnosis phase, you will After doctors classify a tumor with the also learn about the grade of your cancer. TNM system, an overall stage is assigned, Tumors with a large number of highly ranging from stage 0 to stage IV. abnormal cells are called high grade, and they are known to reproduce and spread If you have stage II, III, or IV, you may faster than cells in low-grade tumors. receive a further classification such as A, B, or C, which helps your treatment To complete the staging process, team determine the best treatment CRC is classified according to the TNM options for your diagnosis. system (tumor, node, metastasis) developed by the American Joint Committee on Cancer (AJCC): $$ CONCERNS? • Tumor: How far the tumor extends from If you have concerns regarding the inner lining of the colon or rectum any part of your medical treatment through the layers of its walls or with your medical provider, • Nodes: Whether cancer cells are found ask for a second opinion. in the lymph nodes by the colon • Metastasis: Whether cancer has spread beyond the large bowel and its adjacent tissues, to organs like the lungs or liver

“Getting an accurate diagnosis takes time. If you feel any uncertainty, get a second or even third opinion. A good doctor welcomes second opinions.”

- Rose Hausmann, Stage IV fighter

8 • Your Guide In The Fight • Part 1 •

Stages of Colorectal Cancer Based on the TNM Classification System

Primary Tumor (T) Stage TNM Classification

TX: Primary tumor cannot be 0 Tis, N0, M0 evaluated TO: No evidence of primary tumor I T1-T2, N0, M0 Tis: “Carcinoma in situ” or CIS (abnormal cells are present but IIA T3, N0, M0 not yet cancer) T1, T2, T3, T4: Size and/or extent of the primary tumor. IIB T4a, N0, M0 The higher the T number, the larger the tumor and/or the more it has grown into nearby tissues. IIC T4b, N0, M0

T1-T2, N1, M0 Regional Lymph Nodes (N) IIIA T1, N2a, M0

NX: Regional lymph nodes cannot be evaluated T3-T4a, N1, M0 NO: No regional lymph node IIIB T2-T3, N2a, M0 involvement T1-T2, N2b, M0 N1, N2, N3: Degree of regional lymph node involvement (number and location of lymph nodes) T4a, N2a, M0 IIIC T3-T4a, N2b, M0 T4b, N1-N2, M0 Distant Metastasis (M)

IVA Any T, Any N, M1a MX: Distant metastasis cannot be evaluated MO: No distant metastasis IVB Any T, Any N, M1b M1, M1a, M1b: Degree of metastasis

• Diagnosis & Treatment • 9 Finding the right people for your healthcare team can take time, and that’s okay.

10 • Your Guide In The Fight • Part 1 • TALKING TO THE RIGHT PEOPLE 3

After you are diagnosed with colorectal cancer, you will need to work with a reliable healthcare team.

FINDING THE RIGHT PEOPLE for your healthcare team can FIND DOCTORS AND SPECIALISTS THAT: take time, and that’s okay. You’re hiring each specialist 1 You respect for a very important job – hire people you want to work with! 2 You can talk to easily

Remember, you can meet 3 Don’t make you feel rushed with more than one doctor to ensure that you’re working 4 Answer your questions with a team that suits your needs. Second opinions are 5 Help you gather information to make a common way to get more thoughtful treatment decisions information and may help you access different treatment options or clinical trials.

Information on clinical trials can be found on pages 30-31.

• Diagnosis & Treatment • 11 3 TALKING TO THE RIGHT PEOPLE · continued

KEY MEMBERS For a medical oncologist, contact the OF YOUR TEAM American Society of Clinical Oncology Cancer.net or call 888.651.3038

A CANCER DIAGNOSIS requires a RADIATION ONCOLOGIST: This doctor multidisciplinary team – a group of specializes in treating cancer with healthcare professionals with specialized radiation therapy to target and kill cancer skills and expertise. cells. Radiation treatment is often used to treat rectal cancers. Effective teamwork requires collaboration and communication, especially when it For a radiation oncologist, comes to treatment recommendations contact The American Society for comprehensive, high-quality care. It for Radiation Oncology is important to ensure all your providers astro.org or call 703-502-1550 communicate with you and one another. ONCOLOGY NURSE: This nurse specializes in treating side effects that result from TREATMENT TEAM colorectal cancer treatment. An oncology nurse may administer your treatment ENDOSCOPIST: A specialist trained in the and can be a key resource for information use of an endoscope. Usually, the biopsy and support. will be taken by the gastroenterologist or endoscopist at the time of colonoscopy. PALLIATIVE CARE DOCTOR / NURSE: This specialist can work with your SURGEON OR SURGICAL ONCOLOGIST: treatment team to relieve pain and manage This specialist is the doctor who will other uncomfortable side effects. Palliative perform your surgery. Look for a surgeon care can begin at the time of diagnosis experienced with colon and rectal and can continue throughout treatment. cancer. (This is especially important For more information about for rectal cancers.) palliative care, read Part 2 of Your Guide in the Fight. For a referral, contact the American Society of Colon and Rectal Surgeons: fascrs.org SUPPORT TEAM

If you are considering liver or lung ONCOLOGY SOCIAL WORKER: Social surgery, you should consult with a workers provide many services to cancer specialist experienced with colorectal patients and their families. They can serve cancer metastasis. as a bridge to your medical team and offer advice and resources to help you. MEDICAL ONCOLOGIST: This doctor specializes in the general PHYSICAL/OCCUPATIONAL THERAPISTS: diagnosis and treatment of cancer. Medical You may require rehabilitation during oncologists are experts in medications and after treatment. A physical or like chemotherapy, targeted therapy, and occupational therapist may work with immunotherapies to treat cancer. you to reach optimal physical function.

12 • Your Guide In The Fight • Part 1 • “Cancer affects far more than the body—it affects our spirit, our sense of ourselves in the world, our sense of meaning—even our sense of what’s true or not. As an oncology chaplain, I walk beside those touched by cancer, providing a compassionate presence, exploring those questions as they unfold… trusting that such connections help keep us afloat.” - Michael Eselun, BCC Chaplain

FERTILITY SPECIALIST: If you are PSYCHO-ONCOLOGIST / THERAPIST: of childbearing age and considering These mental health professionals are family planning, discuss fertility trained to help you address the many preservation with your doctor before challenges associated with cancer. These beginning treatment. Your doctor may challenges could include adjusting to refer you to a fertility specialist to discuss the diagnosis, the stresses of medical fertility preservation methods. treatment, emotional needs, relationship navigation, and more. For questions to ask a specialist, see page 16. REGISTERED DIETITIAN: A dietitian will educate you on how to eat well GENETIC COUNSELOR: In some cases, during and after treatment. You may find doctors may recommend seeing a genetic that your eating habits change during counselor. There are a number of genetic treatment. Knowing what to eat can help syndromes linked with a higher likelihood you stay nourished. of developing colorectal cancer. Learning if you have one of the syndromes is CHAPLAIN/SPIRITUAL CARE: Chaplains important for treatment decisions and for have the unique role of addressing alerting family members. existential questions asked by a patient. For detailed information on family You can request to talk to a chaplain, history, read Part 2 of Your Guide in the or your hospital may ask you if you’d like Fight and visit FightCRC.org to download a to speak to one. copy of the Genetics Mini Magazine. PEER-TO-PEER HOSPICE CARE: Hospice care teams focus on providing the best quality of life to an individual at the end of life. Unlike PATIENT NAVIGATOR: These are trained palliative care, hospice care is usually individuals who guide you through the provided to patients with a life expectancy cancer continuum – from diagnosis to of less than 6 months. survivorship. They are trained to direct you to support services and any additional For more detailed information about resources you may need. hospice care, read Part 3 of Your Guide in the Fight.

• Diagnosis & Treatment • 13 3 TALKING TO THE RIGHT PEOPLE · continued

COMMUNICATING WITH YOUR you of your next appointment, and help you track when you need help with work, HEALTHCARE TEAM family, school, or other responsibilities. To ensure you have productive conversations with your healthcare team BRING SOMEONE WITH YOU at each appointment, do your best to stay 2 TO APPOINTMENTS organized. Here are some tips to help get you started. A second set of ears and eyes can be helpful at appointments. This can help you CARRY A NOTEBOOK manage all the information about your 1 diagnosis and treatment. A friend or family member can help you remember things Write Questions: Write down all and can also take notes. questions that come to mind. When you get answers, write those down too. You’ll likely ask about everything from common USE AN ONLINE PLANNER & treatment reactions to follow-up plans and 3 GET HELP WHEN YOU NEED IT logistics. Ask your family and friends for help Track Side Effects: Keep track of when you need it. An online planner symptoms or side effects that make you can let friends and family know how uncomfortable or stop you from doing to help you with everyday tasks like things you enjoy. Use the list as a reminder driving you to medical appointments, to ask about relieving those problems. preparing dinner, watching kids, or making phone calls. Additional resources: FightCRC.org/Resources

Consider resources like: Keep Track of Medication: Write a list of all supplements, vitamins, prescriptions, Lotsa Helping Hands or over-the-counter (OTC) medications a web-based caregiving you are taking (including medication for coordination service diabetes, cholesterol or anything else). RCI.LotsaHelpingHands.com Each of your physicians must know this My Lifeline information because some medications a patient website to update family and supplements can adversely affect your and friends and post requests treatment or may react badly with cancer MyLifeLine.org drugs. Keep your list in one place so you, your caregiver, and your doctors can iCancerHealth keep track. an app to help you manage cancer care FightCRC.org/iCancerHealth Make a “To do” List: Keep a to-do list with your calendar to help you remember what medications to take and when, remind

14 • Your Guide In The Fight • Part 1 • NOTES 4 DRIVE THE DISCUSSION

This is your life, and your cancer diagnosis. Therefore, it’s very important that you understand your treatment options. Talk slowly with your providers, set the pace of the discussion, and pause when you need to so you can process the information and ask questions.

5 GET A SECOND OPINION

You can get a second opinion at any point during diagnosis and treatment. In fact, most doctors encourage it.

Consider a second opinion to:

• Feel comfortable with the treatment you receive • Learn more about clinical trials • Get reassurance that you’re on the right track

If the second opinion is the same as the first, great. If it’s different, you may want to check with a third expert to help you make your decision.

To prepare for conversations with other doctors or medical experts, gather the following documents:

• Family history • Labs • Scans • Surgical test results

Share these documents with the second- opinion expert before your appointment. If possible, schedule your second-opinion appointment before you start treatment.

• Diagnosis & Treatment • 15 3 TALKING TO THE RIGHT PEOPLE · continued

FINDING TREATMENT SERVICES FAMILY PLANNING

Investigate your options. Learn what Treatment for colorectal cancer can affect hospitals or medical facilities are in your fertility in several ways, for both men town or city and the services available to and women. If you’re considering family you. This is especially important if you have planning, it is best to have the discussion metastatic CRC, as some treatment options with your care team as early as possible, are not available in community clinics. You and before treatment begins. This allows may need to look to other cities. time for referral to a fertility specialist to learn about your risk of infertility and For a complete list of National pursue fertility preservation. Also, fertility Comprehensive Cancer Network preservation is expensive and costs vary institutions with a full range of between geographic regions. Make sure experienced staff visit NCCN.org to talk to your insurance to find out if they Call Fight CRC’s toll-free resource will cover your fertility treatment. There are line (1.877.427.2111) to speak directly a few organizations that help with costs. with a counselor from Cancer Support These include Walgreens® Community. They can connect callers (https://www.walgreens.com/topic/specialty- to local or national resources, including pharmacy/fertility-preservation.jsp) support groups, transportation services, and Livestrong® and other programs. Available in 200 (https://www.livestrong.org/we-can-help/ languages from 9am-9pm EST, livestrong-fertility) Monday-Friday. Questions to ask my care team before starting treatment:

Q: What are my options to preserve my fertility? Q: How will my treatment plan affect my plans to have children in the future? Q: Will this treatment make me infertile? And if so, for how long? Q: Will my fertility preservation have any effect on my cancer treatments? Q: Are there any effects my treatment may have on my ability to carry a child in the future? Q: Can you refer me to a fertility specialist who has experience in treating cancer patients?

16 • Your Guide In The Fight • Part 1 • FINDING RELIABLE INFORMATION ON THE INTERNET 4

Your treatment team is your best resource for information.

IF YOU CHOOSE TO research colorectal cancer on the $$ CREDIBLE SOURCES Internet, take care to find These organizations all provide information that is reliable trustworthy information: and appropriate for your particular diagnosis. Be • Fight Colorectal Cancer cautious. Not all online health FightColorectalCancer.org information is accurate. • American Cancer Society Many websites offer Cancer.org information about colorectal cancer and how to treat it. • Comprehensive Cancer Centers Before you believe everything CancerCenters.Cancer.gov you read, pay attention to the • National Cancer Institute source of information. Avoid Cancer.gov clicking on sites that randomly pop up and don’t provide trustworthy information.

• Diagnosis & Treatment • 17 4 INTERPRETING MEDICAL INFORMATION ON THE WEB · continued

OUR TOP SITES FOR RELIABLE INFORMATION: WHEN SEARCHING FOR AND READING These websites offer good, reliable INFORMATION ONLINE: information on colorectal cancer: • If you are reviewing scientific journal • HealthOnNet.org (search tool) articles, ask your doctor to help you interpret the article’s findings • HealthFinder.gov (healthy living, personalized health advice) • Don’t hesitate to ask your treatment team to validate what you read • ncbi.nlm.nih.gov/pubmed (scientific journal articles) • Consider the top level domain: •UpToDate.com (peer reviewed, evidence- • A government agency has “.gov” based medicine) in the address •Cancer.gov/Types/Colorectal (information • An educational institution is indicated on colorectal cancer) by “.edu” in the address •nlm.nih.gov/MedlinePlus • A professional organization like a (health information) scientific or research society will be identified as “.org” It can’t be overemphasized how important it is to be critical about health information you read. The same online tips apply to social media, like Facebook and Twitter. Find and follow sources you TRUST.

NOTES

18 • Your Guide In The Fight • Part 1 • GET STARTED ONLINE... Median Overall Survival: the time at which 50 percent of patients Fight CRC is committed to providing are still alive after a diagnosis patients and caregivers with reliable or particular treatment and relevant information. We provide Median Disease-Free Survival: fact sheets, webinars, blogs, magazines, the time at which 50 percent of and podcasts that cover a range of topics patients are still alive without evidence from treatment options to survivorship. of tumor recurrence • Bookmark our website: Progression-Free Survival: the time FightCRC.org it takes from the start of a treatment for the cancer to grow or spread • Join our Inspire page: FightCRC.org/Inspire Recurrence: A return of cancer after it has been initially treated (for example, • @FightCRC a person whose cancer comes back after treatment is said to have a “recurrence”) Doctors give survival statistics based on historical information. The numbers do not HOW TO READ SURVIVAL reflect current standards of care or recent STATISTICS improvements in chemotherapy, surgery, and radiation therapy. Improvement in Many patients ask: “How long do I have?” treatments over time has increased the Don’t be surprised if your doctor doesn’t relative survival for people diagnosed at give you a firm answer. While doctors can stage III and stage IV CRC. share average statistics for people with diagnoses similar to yours, the truth is Remember: survival statistics may not every case is unique and yours is too! predict the outcome of your case!

Doctors use different statistics and terms While most cases of metastatic cancer to discuss survival. Based on the type of cannot be cured, new treatments have statistic, you might run across differences greatly increased the time people live in what you’re told. with advanced disease. We don’t have a cure for all metastatic CRC patients TYPES OF SURVIVAL STATISTICS: yet; however, some stage IV patients have been cured, particularly those Five-Year Overall Survival: the percentage with surgically removable metastases of patients alive at five years after only to the liver. diagnosis, including deaths from cancer and other illnesses Five-Year Relative Survival: the percentage of patients alive at five years after diagnosis, not including deaths from other illnesses

• Diagnosis & Treatment • 19 A second opinion from a major cancer center can be helpful as you decide which course of treatment to take.

Denelle Suranski Stage II survivor 20 UNDERSTANDING YOUR TREATMENT OPTIONS 5

TREATMENT TERMS Your treatment may • Primary treatment: include combinations the main treatment for cancer of surgery, chemotherapy, • Neoadjuvant treatment: given before surgery immunotherapy, or radiation. • Adjuvant treatment: given after surgery • First-line treatment: YOU MAY RECEIVE THE standard the first treatment given of care, or be offered treatment to patients with metastatic CRC on a clinical trial. Ideally, you can work with a multidisciplinary • Second-line treatment: team to discuss all of your treatment given if the first treat- treatment options and possible ment for metastatic CRC fails combinations. Remember: you play a key role in choosing your treatment plan. More on clinical trials on pages Don’t hesitate to ask your treatment 32-33. team questions!

A second opinion from a major WATCHFUL WAITING cancer center can be helpful According to the National Cancer as you decide which course Institute, “watchful waiting” is of treatment to take. sometimes used in conditions that progress slowly. It is also used when Understanding your treatment the risks of treatment are greater options is an essential step. This than the possible benefits. During section will explain the types of watchful waiting, patients may be treatments and how combined given certain tests and exams. Talk to treatments are used for stage III, your doctor about this approach for stage IV, and recurrent CRC. your specific colon or rectal cancer.

• Diagnosis & Treatment • 21 5 UNDERSTANDING YOUR TREATMENT OPTIONS · continued

NCCN GUIDELINES FACTORS THAT MAY AFFECT FOR PATIENTS YOUR TREATMENT PLAN • The stage of cancer (whether it has The National spread through the colon or rectal wall, Comprehensive Cancer to lymph nodes, or has spread in the Network (NCCN) is a body) See page 9 for more info on “not-for-profit alliance CRC staging. of centers that develops practice guidelines to • Your overall health and how well your help in making informed body can handle treatment treatment decisions.” • Whether or not the cancer has blocked the colon or made a hole Fight CRC supports NCCN in the colon wall and their tools, which you • Whether or not surgery completely can use as a reference. removed the tumor and all metastatic NCCN Guidelines for tumors that could be detected Patients® are easy-to- understand resources • The specific tumor type, defined by based on the same laboratory tests known as biomarkers. guidelines used Results from this test will help doctors by your treatment team for all CRC stages. personalize your treatment plan Remember: If you have stage III or IV CRC, For more information visit: NCCN.org ask your doctor to have a biomarker test, and make sure you know your MSI status. For more about biomarkers, see page 26. Your choice of treatment may also depend upon your personal preferences.

If you have... Your personal preference So your doctor may might be to... suggest...

Rectal Cancer Avoid a permanent colostomy Chemotherapy and radiation before surgery to shrink the tumor, so a smaller portion of your rectum can be surgically removed

Stage III CRC Change your lifestyle to help Specific diet and exercise prevent a recurrence modifications you can adopt after treatment

Metastatic cancer that’s Shrink your metastatic Talking with an experienced spread to the liver disease enough to allow liver surgeon who can advise for liver surgery on different techniques to shrink tumors before surgery

A tumor that’s pressing on a Reduce pain through Talking with an interventional nerve and causing pain treatment radiologist to see if targeted radiation or radiofrequency ablation could help

22 • Your Guide In The Fight • Part 1 • GENERAL TREATMENT Questions to ask Questions to ask OPTIONS BEFORE your initial AFTER your initial surgery... surgery...

What stage of cancer What is my post- SURGERY do my pre-surgical surgical diagnosis? diagnostic tests indicate I have? If you have been diagnosed with colon cancer, your first treatment How many operations What is the stage of my may be surgery to remove the for this kind of cancer cancer? primary tumor. If you have been does the recommended diagnosed with rectal cancer, surgical specialist perform each year? you may receive radiation and (Ideally you will chemotherapy before surgery. work with a surgical oncologist, general HERE IS WHAT TO EXPECT: surgeon or colorectal surgeon who conducts BEFORE surgery: at least 12 operations yearly on your type • Your blood counts will be of cancer.) measured Is the specialist a What additional tests • Your blood chemistry and CEA certified colorectal should be done to levels will be evaluated (read surgeon? (This training increase the accuracy more about CEA on page 26) is especially important of my diagnosis and for rectal cancer determine my need for • You will have a CT scan of the treatment.) additional treatment? chest, abdomen and pelvis, or a Should I have my tumor What can I do to help PET scan, to determine exactly tested prior to surgery? recover from surgery? where the cancer is located. Many rectal cancer patients Will a temporary or How soon can I return will have an MRI and/or a permanent ostomy be to normal activity? endorectal ultrasound necessary? AFTER surgery: Do I need chemotherapy Is there anything I and/or radiation therapy should avoid doing • The same tests noted above are before or after surgery? immediately after often done again after surgery surgery (for example, to compare results vigorous exercise)? • Surgery alone is not enough How many lymph nodes Who should I call to best treat stage III or stage do you anticipate will if I have questions? be removed during IV CRC, so your medical team surgery? (At least 12 will likely recommend that you should be removed, undergo additional treatment although the surgeon may not know this answer for sure until after the pathology report is back.)

• Diagnosis & Treatment • 23 5 UNDERSTANDING YOUR TREATMENT OPTIONS · continued

Be patient if it takes time to get used Additional Questions to Ask Your to dealing with your ostomy pouch. If you Doctor if You’re Stage IV or a need to try different kinds until you find Recurrent Survivor: the one that works best for you. Q: Where do I have metastatic tumors? Some patients may be offered ostomy Q: Can they be removed or treated? reversal surgery after treatment, while for others, it may not ever be recommend- Q: How do I obtain a copy of my pathology ed or cannot be done. The reversal is an report and testing information? additional surgery requiring several weeks Q: If an ostomy was performed: for recovery. Talk to your doctors if a Can an ostomy expert on staff help reversal surgery is something for you me learn how to use the appliance? to consider in the future.

Q: What follow-up care or follow-up “I had a couple months to prepare and treatment will I need? in the end I was okay with having to have a permanent colostomy. For me, I saw it as my lifeline to continue to live. I still OSTOMY swim, walk, and climb mountains. I do what I want to do. But you need to be You may require a colostomy as part very honest and upfront with your doctor. of your surgical treatment. Whether Don’t be afraid to ask questions.” temporary or permanent, an ostomy - Pam Seijo, Stage III survivor creates a new path for your body’s waste through a stoma, which leads your colon directly through an opening in your abdomen. An ostomy pouch fastens to the $$ TIPS FOR ADJUSTING skin around the stoma to collect waste. TO AN OSTOMY Whether the ostomy is temporary or • Ask what supplies are necessary permanent, people with ostomies can live as fully as everyone else. • Ask if there’s an ostomy nurse who can help you at home after surgery Before you leave the hospital with a stoma, • Ask how to recognize potential an ostomy nurse should show you how to: problems before they occur • Empty and replace the pouch • Ask about alternative pouching systems if yours is uncomfortable • Carefully care for and clean the skin around your stoma • Contact a local ostomy organization for support: • Manage your diet and daily activities • The United Ostomy Association • Determine which problems require of America: Ostomy.org a call to your doctor

24 • Your Guide In The Fight • Part 1 • Whether the ostomy is temporary or permanent, people with ostomies can live as fully as everyone else.

Chris Ganser Stage III fighter 25 5 UNDERSTANDING YOUR TREATMENT OPTIONS · continued

BIOMARKER TESTS epidermal growth factor Vemurafenib is a drug receptor (EGFR) process. If that was included as a You need to be tested a biomarker test indicates therapeutic option to treat for certain biomarkers, a KRAS or NRAS mutation, BRAF V600e CRC in the also called biological drugs that target EGFR 2018 version of the markers, before you receive (like cetuximab, and National Comprehensive treatment. This process is panitumumab) may not be Cancer Network’s Clinical called “tumor or genomic beneficial. In addition, the Practice Guideline. testing” or “biomarker sidedness of your tumor— PIK3CA testing: There testing.” Biomarker testing whether it arises in the is some suggestion that can help your healthcare right versus left colon— aspirin use may help team determine treatments may affect the treatment decrease the risk of that may or may not be implications of KRAS and recurrent colorectal cancer right for you. NRAS testing. in patients who have the By choosing a treatment This test is typically PIK3CA mutation. plan that best matches for stage IV patients your tumor type, you may and for any stage with a Protein Specific: experience fewer side recurrence. Carcinoembryonic antigen effects and improved (CEA) testing: CEA is a health. This approach All stage IV colon and rectal protein known as a tumor to planning treatment is cancer patients should receive marker that may be known as “personalized KRAS and NRAS testing BEFORE elevated in CRC patients. medicine.” chemotherapy begins. Increasing levels of CEA Personalized medicine may indicate that cancer is uses specific information BRAF testing: BRAF is growing while decreasing about your body and tumor also a gene that signals levels may indicate that to help diagnose and plan cells to divide. Patients treatment is working. treatment, as well as find with mutant BRAF genes NTRK: TRK fusions are a out how well the treatment do not respond to EGFR- genetic abnormality that is working based on your targeting drugs, and occurs when one of the body’s biology. generally have a poorer NTRK genes become prognosis. Like KRAS and connected (fused) to COMMON BIOMARKER NRAS testing, this test is another gene. Only a very TESTS FOR COLORECTAL typically recommended for small subset of colorectal CANCER stage IV patients, although cancer patients present it is sometimes done in with TRK, however those Genetic Mutations: patients with stage III patients may have the KRAS and NRAS (RAS) cancer. This test can be option of being treated with testing: KRAS and done at the same time as larotrectinib (Vitrakvi®). NRAS are genes that KRAS and NRAS testing. play an important role The BRAF V600e mutation in instructing colorectal is a particularly aggressive cancer cells to grow cancer that requires and divide as part of the aggressive treatment.

26 • Your Guide In The Fight • Part 1 • DNA Abnormalities: Microsatellite Instability High (MSI- BIOMARKER TYPES High) Testing: MSI-H is what “happens” when the genes that regulate DNA function • Prognostic markers: used to don’t work correctly. These DNA regulating describe the course of a patient’s genes, known as Mismatch Repair disease, not to predict a response Genes (MMR), work like genetic “spell to treatment checkers” in a word processing program • Predictive biomarkers: deter- by correcting errors in DNA as cells divide mine if a patient will respond well just like spell check corrects typos. When to a particular targeted treatment problems occur in these spell-checking MMR genes, it means that areas of DNA start to become unstable. A high frequency of instability is called MSI-H and is found in about 15% of colon tumors. It used as the first-line of treatment can be found in tumors associated with when compared to patients with genetic syndromes like Lynch syndrome, left-sided tumors. though most tumors that show MSI-H are still sporadic (not due to a genetic Ask your doctor about whether or not predisposition). A test of blood cells can your treatment plan will be different tell if the finding is inherited or acquired. based on the “sidedness of your tumor”. It is important to make this distinction because with inherited MSI, there is a NOTE: There are very few biomarkers higher risk of developing a second cancer, that have been scientifically shown in addition to colorectal. Because of to be meaningful in colorectal this, people with inherited MSI and their cancer, although research is moving relatives may need extra screening tests. aggressively in this area. For example, Relatives can be tested with a simple blood Fight CRC is monitoring HER2 (or human test if a patient has an inherited MSI-H epidermal growth factor receptor 2). tumor (Lynch syndrome). Patients Talk with your healthcare team to see with MSI-H tumors may respond which biomarker tests are appropriate differently to certain treatments. It is for you and check back at FightCRC.org important to test tumors for this trait. for research updates. It can also help determine if a patient developed colorectal cancer related to an inherited family syndrome.

Tumor Sidedness: For more detailed information about biomarkers and biomarker testing, There may be a difference in biology, visit FightCRC.org/Biomarked and depending on the side of the colon that request the Biomarked packet. cancer originates (right versus left). Based on the research, patients with right-sided tumors may not have the same results and success rates if EGFR-inhibitor therapy is

• Diagnosis & Treatment • 27 5 UNDERSTANDING YOUR TREATMENT OPTIONS · continued

CHEMOTHERAPY ORAL CHEMOTHERAPY

If you have stage III or stage IV CRC, Oral chemotherapy, offered as a tablet you will likely need some form of or capsule to be swallowed at home, is chemotherapy. It may be used alone or in absorbed by the stomach. It is as strong combination with other targeted therapies. as other forms of chemotherapy and works just as well as long as it’s taken Chemotherapy is used to stop or limit the on schedule - daily, weekly, monthly, or growth of rapidly dividing cancer cells. otherwise scheduled by your doctor. It can be taken a few different ways: Oral chemotherapy, such as capecitabine • Oral chemotherapy: taken by mouth (Xeloda®), or oral targeted therapy, such as regorafenib (Stivarga®), can cause • Intravenous chemotherapy: injected the same side effects as other forms of into a vein to reach cancer cells chemotherapy. Your doctor will want to throughout the body (systemically) know about any problems you have when • Regional chemotherapy: placed taking oral medication. It is important to directly into the abdomen so the drugs take your pills exactly as prescribed – this mostly affect cancer cells in that area is called treatment adherence. Side effects will depend on how your Talk with your doctor or nurse about chemotherapy is given and the type of the importance of taking your medication chemotherapy drug you receive. Since on time and as directed. chemotherapy attacks all rapidly dividing cells, healthy cells from all over the body may be impacted, too. • Specialty pharmacy: a drug supplier who distributes drugs that treat It’s common to have side effects such complex conditions (like cancer) and as mouth sores, fatigue, and stomach are high cost - or more complex than - irritation, for example. If you have side other drugs, which are usually provided effects that you were not prepared for, by a standard retail pharmacy or side effects that are severe, don’t hesitate to call your doctor! If you are prescribed an oral chemotherapy or an oral targeted therapy, you will work For more information on side effects with a specialty pharmacist to fulfill your and side effect management, read Part 2 prescription. Your specialty pharmacist of Your Guide in the Fight. should be considered part of your healthcare team.

Often, specialty pharmacies deliver your medication by mail, so be sure to ask your healthcare team the name of the specialty pharmacy you should be expecting to hear from. Make sure you understand exactly how to take your medication and notify them about any side effects that you experience.

28 • Your Guide In The Fight • Part 1 • TARGETED THERAPY

Targeted therapies are drugs that block the growth of cancer by interfering with the molecules involved in tumor growth and spreading. Most targeted therapies are either small-molecule drugs or monoclonal antibodies.

• Small-molecule drugs: drugs that attack proteins inside cancer cells • Monoclonal antibodies: drugs that attack proteins outside of cancer cells or on the cell surface More information on targeted therapy can be found on page 40.

NOTES

• Diagnosis & Treatment • 29 5 UNDERSTANDING YOUR TREATMENT OPTIONS · continued

RADIATION THERAPY TYPES OF RADIATION TREATMENT:

Radiation therapy is not often used External beam radiotherapy (EBRT) to treat colon cancer. When used for uses a machine outside the body to direct colon cancer, it is most often to treat radiation toward the cancer. This is the tumors that have grown next to or into most common approach. other organs. Radiation therapy may also Internal radiotherapy uses a radioactive be used to relieve side effects and improve substance sealed in needles, seeds, wires, quality of life. or catheters and placed directly into or near the cancer. If you have stage III or IV rectal cancer, radiation therapy may be recommended. Intensity-modulated radiotherapy (IMRT) is a form of external beam radiation Radiation uses high-energy x-rays or therapy. It uses small beams of varying other types of radiation to kill cancer intensity to give the highest possible cells. There are several types of radiation doses to the tumor while avoiding as much therapy. The intensity of radiation healthy tissue exposure as possible. treatment and the way radiation therapy is given depends upon the type, location, Selective Internal Radiation and stage of the cancer being treated. (SIR-Spheres® Microspheres or Interventional radiology procedures are Theraspheres®) are tiny beads covered sometimes used when a tumor cannot with radioactive material that are injected be surgically removed. These techniques into the liver to target liver metastases. generally involve no large incisions and are They are a permanent implant for single- associated with less risk, less pain, use, providing a high-energy isotope and shorter recovery times than open to kill cancer cells in the liver from surgical procedures. metastasized CRC. Intraoperative radiotherapy (IORT) is given during surgery for late-stage or recurrent cancer. Radiofrequency ablation (using high intensity heat to destroy a tumor) or cryosurgery (the use of extreme cold to destroy a tumor) is used for patients whose tumors can’t be removed by surgery. Radio surgery delivers a single high dose fraction of radiation directed to the tumor to try to eliminate a tumor in a single site, such as the liver or the lung.

30 • Your Guide In The Fight • Part 1 • If you have stage III or IV rectal cancer, radiation therapy may be discussed.

David Brasher Stage III survivor 31 5 UNDERSTANDING YOUR TREATMENT OPTIONS · continued

IMMUNOTHERAPY THE FIGHT CRC CLINICAL Immunotherapy is treatment that uses TRIAL FINDER: certain parts of a person’s immune system to fight diseases such as cancer. The goal Visit Fight CRC’s one-stop place to find of immunotherapy is to boost a patient’s and learn more about high-impact clinical immune reaction to the cancer cells, trials for CRC patients. The Fight CRC allowing them to fight the disease Clinical Trial Finder is a tool that lets you more effectively. search for clinical trials that are open in your geography, and for which you may be Checkpoint inhibitors are a type of eligible. The current data are limited to MSS immunotherapy that work by targeting (microsatellite-stable) and stage IV CRC molecules that serve as brakes on patients. Visit TrialFinder.FightCRC.org the immune response. Currently, immunotherapy for colorectal cancer is only effective in a small portion of Clinical trials require a patient to qualify or patients who are considered microsatellite be eligible to participate based on specific unstable, or MSI-High. (Read page 27 on medical criteria. biomarkers to learn more about MSI) If you’re interested in a clinical trial, you will be provided clear information about CLINICAL TRIALS the study before you decide to participate. Once on a clinical trial, your treatment It’s a good idea to talk with your team will closely monitor you. You’ll report healthcare team to learn about clinical how you’re doing throughout the trial and trials. Clinical trials test new treatments have the option to drop out at any time. like drug therapy, surgery, radiation, and combination procedures for CRC and There are many types of clinical trial other cancers. There are also clinical trials designs. A common type is called a that test new ways to stop cancer from randomized clinical trial (RCT). Some recurring and reduce the side effects of phase II and all phase III trials are cancer treatment. randomized, meaning participants are divided into groups where one group gets All treatments go through the clinical the standard of care while the other gets trial process before the Food and Drug the new treatment, with or without the Administration (FDA) approves them for standard of care. This allows the groups public use. Trials are designed to protect to be compared, and is considered best participants, while collecting information scientific practice. Most trials are not to show whether or not an experimental placebo controlled; therefore, treatment is safe and effective. Most all patients receive treatment. often patients participate in clinical trials because they hope a new treatment will Progress has been made in treating benefit them, or they want to contribute CRC over the past decades, in part due to the future of medicine. to patient participation in clinical trials. Ask your treatment team if you qualify for any clinical trials.

32 • Your Guide In The Fight • Part 1 • CLINICAL TRIAL PHASES QUESTIONS TO ASK YOUR TREATMENT Phase I answers the questions: how much, TEAM REGARDING CLINICAL TRIALS: how safe, how often? Q: Am I eligible for a clinical trial? Do you Phase II answers the question: does the feel that a trial is a good choice for me? new treatment do any good? Q: How do the possible risks and benefits Phase III answers the question: what’s of the new treatment compare with better: a new treatment or the standard other treatment options? treatment? Q: Are there extra procedures or visits in NOTE: Phase I trials are often not in the the trial compared with standard care? large databases. Look on the websites Q: Who will pay for the trial? of cancer centers near you to see what they are offering, or call their oncology Q: What is the standard treatment department. for someone in my situation? Visit Fight Colorectal Cancer’s clinical Q: What will my treatment schedule trials page: FightCRC.org/ClinicalTrials look like? Q: What are the short- and long-term The National Institutes of Health side effects of the treatment you Clinical Trials Matching Service: are recommending? ClinicalTrials.gov Q: How will my health be monitored * All phase III and most phase II trials during treatment? are required by the FDA to be listed in this website, including all government- Q: Is there a placebo? sponsored trials and most pharmaceutical Q: If I’m not eligible now, will I be and university-sponsored trials. For specific eligible in the future? results, refine your search by location, type of trial or treatment, or by specific drug name.

• Diagnosis & Treatment • 33 5 UNDERSTANDING YOUR TREATMENT OPTIONS · continued

TREATMENT OPTIONS BY DIAGNOSIS

The treatments listed here offer general information for stage III colon cancer, stage III rectal cancer, and stage IV (metastatic) disease.

STAGE III COLON CANCER • Temporary Ostomy & Reversal Surgery: SURGERY a colostomy reversal is possible if Initial treatment for stage III colon the colon can heal after the resection cancer surgically removes the section surgery. When healing is complete of colon that contains the tumor and (after a few months or years), a reverse surrounding tissue with its blood vessels colostomy surgery (colostomy take- and lymph nodes. down) is performed so the stoma will no longer be necessary. Reverse colostomy • Colectomy: removes the cancerous involves reconnecting the healed colon part of the colon and nearby lymph to your digestive tract using sutures nodes. This surgery can be done that will dissolve. This allows the colon through a large incision in your to function normally again. abdomen, or with laparoscopic surgery through a small incision. After the CHEMOTHERAPY cancerous part of the colon is removed Chemotherapy is generally recommended (called a resection), the two ends of after surgery for stage III colon cancer the remaining colon are reattached to patients to improve survival by preventing eliminate waste through the rectum. the cancer from coming back (recurring). • Colostomy: creates a way for stool to be removed from the body when Make sure that you the colon cannot function normally. In receive biomarker this procedure, a stoma (opening) is testing that can help made to the outside of the body and to individualize treatment. an ostomy pouch is placed around the stoma to collect and remove waste. An ostomy refers to the opening in the For patients able to tolerate body for waste; while the stoma is the combination chemotherapy that actual end of the intestine seen peeking includes oxaliplatin (Eloxatin®): through the abdominal wall. Learning how to care for your ostomy is essential • FOLFOX: combination treatment for your wellbeing after this procedure. of 5-FU, folinic acid, and oxaliplatin A colostomy can be temporary or permanent. See page 24. • FLOX: combination with bolus dose 5-FU, folinic acid, and oxaliplatin

34 • Your Guide In The Fight • Part 1 • Severe diarrhea is more common Your doctor can discuss the advantages with FLOX than FOLFOX but outcomes and disadvantages of each chemotherapy are similar. regimen or a clinical trial for your individual needs. For patients who have medical reasons not to use combination chemotherapy: RADIATION

• Xeloda® (capecitabine): oral If the surgeon finds that the tumor chemotherapy which is converted has spread outside the colon to the to 5-FU in the tissues wall of the abdomen or other nearby tissues, follow-up radiation treatment • 5-FU and leucovorin may be recommended. Radiation is not routine for stage III colon cancer.

STAGE III RECTAL CANCER of the tumor requires removal of the muscles that control bowel movements SURGERY as well as the anus. For rectal cancer, abdominal surgery CHEMOTHERAPY COMBINATIONS is often required to remove tumors. For stage III rectal cancer patients who are You may be treated with radiation and medically fit and can tolerate combined chemotherapy before surgery. methods of therapy, treatment can • Low anterior resection (LAR): the include chemoradiation (chemotherapy tumor and part of the rectum is and radiation) before surgery, abdominal removed without affecting the anus. surgery, and/or adjuvant chemotherapy Then the colon is attached to the after surgery. Patients who cannot tolerate remaining part of the rectum so that chemoradiation at first may have surgery after the surgery your stool can exit first, followed by adjuvant chemotherapy, through the anus like it does before and/or chemoradiation after surgery. surgery. For some, a temporary colostomy is needed. TOTAL NEOADJUVANT THERAPY (TNT) • Abdominoperineal resection (APR): Some institutions are attempting to one incision is made in the abdomen and move all the therapy to pre-surgery, another in the perineal area between the including chemotherapy. This is called legs to remove the anus and the tissues Total Neoadjuvant Therapy (TNT). In surrounding it, including the sphincter this case, chemotherapy followed by muscle. This is a more invasive surgery chemoradiation, followed by surgery, is a than the LAR because the anus is potential treatment option. One advantage removed. With an APR you will need a to this approach is the ability to get more permanent colostomy to allow stool a treatment with chemotherapy since the path out of the body. It is mainly used radiation and surgery can compromise the for large tumors and those arising very treatment if it is given at the end of the close to the anus such that removal other therapies.

• Diagnosis & Treatment • 35 5 UNDERSTANDING YOUR TREATMENT OPTIONS · continued

CHEMORADIATION COMBINATIONS ADJUVANT CHEMORADIATION OPTIONS (A “SANDWICH” OF CHEMO- • Continuous infusion 5-FU and external CHEMORADIATION-CHEMO): beam radiation (EBRT). Treatment usually lasts several weeks. The • 5-FU with leucovorin or FOLFOX chemotherapy drug is delivered or capecitabine (Xeloda®) intravenously through a pump carried in a fanny pack to provide a continuous • Radiotherapy with either continuous infusion of 5-FU infusion 5-FU or capecitabine (Xeloda®) • Oral capecitabine (Xeloda®) and • Additional 5-FU with leucovorin radiation or FOLFOX or capecitabine (Xeloda®)

• Clinical trial STAGE III COLON OR RECTAL CANCER

ADJUVANT CHEMOTHERAPY OPTIONS Depending on your biomarkers, you may want to discuss targeted therapies, • 5-FU and leucovorin like larotrectinib (Vitrakvi®) and entrectinib (Rozlytrek®), with your doctor. • FOLFOX (oxaliplatin, leucovorin, continuous infusion 5-FU) • Oral capecitabine (Xeloda®) • Clinical trial

36 • Your Guide In The Fight • Part 1 • STAGE IV METASTATIC CANCER EXAMPLES OF TREATMENT OPTIONS OR RECURRENT CRC COMBINED TO TREAT METASTATIC DISEASE OVER TIME: You may be terrified when you’re first told • Surgery to remove primary colon or that cancer has spread beyond your colon rectal tumors or rectum and is metastatic; however, take time to get the very best information and • Drug therapy using a variety of advice possible from a multidisciplinary chemotherapy and targeted treatments team. With your healthcare team, consider whether: • Radiation therapy to shrink or destroy both primary and metastatic tumors • Your metastatic tumors are limited • Radiofrequency ablation to shrink or kill enough to be removed surgically tumors with heat from radio waves (resectable) and might be curable • Surgery to remove metastatic tumors • Your tumors are not resectable now, in other areas of the body but with adjuvant treatment might become resectable and converted • Chemotherapy directly applied to liver to a curable situation metastases (Hepatic Arterial Infusion or HAI) • Your cancer is widespread and unlikely to become resectable, and should be • Treatment with radioactive beads treated palliatively with the goal of called Selective Internal Radiation extending your quality of life for as long as possible • Immunotherapy for those who fit specific indications Learn more about palliative care in Part 2 of Your Guide in the Fight. • One or more clinical trials

Get a second opinion, even if it takes extra time. Work with your doctor to determine how to best integrate your treatment needs with your desire to get a second opinion.

• Diagnosis & Treatment • 37 Chemotherapy is used to slow or stop the growth of cancer.

38 • Your Guide In The Fight • Part 1 • SURGERY CHEMOTHERAPY • Ramucirumab with COMBINATIONS FOLFIRI for patients If the liver, lungs, or whose cancer has lining of the abdomen Chemotherapy is used progressed during or (peritoneum) are affected, to slow or stop the growth after treatment with you may undergo of cancer. If colon cancer first-line therapies multiple surgeries to continues to grow after (typically FOLFOX and remove metastatic initial chemotherapy bevacizumab (Avastin®). disease. Chemotherapy treatment, there are many and radiation are often varieties and combinations Patients who cannot combined with surgery to of anti-cancer drugs that tolerate intensive therapy shrink tumors. Surgical doctors may explore have other options. treatments for metastases with you. Doctors may recommend: are highly specialized procedures requiring an CAPOX OR XELOX • 5-FU plus leucovorin with expert team. These are or without bevacizumab frequently done after the • Capecitabine (Xeloda®) (Avastin®) initial surgery is performed plus oxaliplatin • Capecitabine (Xeloda®) on your primary tumor. (Eloxatin®) with or without bevacizumab (Avastin®). • Partial hepatectomy: • Capecitabine is an oral drug that works the Treatment with surgical removal of the capecitabine (Xeloda®) part of the liver with same way as 5-FU inside the cancer cell alone should only be metastases considered a reasonable • Pulmonary FOLFOX option for selected metastasectomy: lung patients who are not metastases are removed • 5-FU, oxaliplatin candidates for more by surgery or laser (Eloxatin®) and aggressive combination leucovorin regimens with oxaliplatin • Chemoembolization: (Eloxatin®) or irinotecan surgery to block the flow FOLFIRI (Camptosar®) of blood to the liver so anti-cancer drugs can • 5-FU, irinotecan • TAS-102 (Lonsurf®) flow directly through (Camptosar®), and leucovorin For more information the liver’s arteries to the on drug combinations for cancer site • These regimens may be patients who have a cancer • Hyperthermic combined with targeted recurrence, or when the Intraperitoneal therapies such as first line of chemotherapy Chemotherapy (HIPEC): bevacizumab (Avastin®), treatment doesn’t stop the peritoneal metastases cetuximab (Erbitux®) growth of cancer, talk with are removed, then or panitumumab your doctor. chemotherapy is (Vectibix®) directed to the abdominal cavity

• Diagnosis & Treatment • 39 5 UNDERSTANDING YOUR TREATMENT OPTIONS · continued

TARGETED THERAPIES Targeted therapy attacks specific proteins • First- or second-line treatment that occur more frequently on or in cancer for metastatic CRC (mCRC), cells than normal cells. Targeted therapies in combination with 5-fluorouracil have been shown to be beneficial in (5-FU) based chemotherapy patients with stage IV CRC. • Second-line treatment for mCRC, Most targeted therapies are either small in combination with fluoropyrimidine- molecule drugs or monoclonal antibodies irinotecan- or fluoropyrimidine- (biologic drugs. See page 27 for more oxaliplatin-based chemo for patients information). Small molecule drugs pass whose cancer progressed on first- into cancer cells and attach to proteins line bevacizumab that are inside the cell. Most monoclonal • Bevacizumab (Avastin®) is a monoclonal antibodies aim at targets that are outside antibody used to block the growth and cancer cells or on the cell surface. Many development of blood vessels monoclonal antibodies are biologics, which are derived from living organisms, versus • Ziv-aflibercept (Zaltrap®) is a chemicals, which are what make small- recombinant fusion protein used to block molecule drugs. blood vessel development • Cetuximab (Erbitux®) is a monoclonal Biosimilars are a drug type equal in terms antibody to inhibit cell growth of effectiveness to biologics (meaning, for patients without a KRAS or there are not clinically significant NRAS mutation differences), but they are not identical because of how they’re made. Biologic • Panitumumab (Vectibix®) is a drugs are derived from living organisms monoclonal antibody to inhibit cell versus chemicals. Learn more about growth for patients without a KRAS biosimilars in the Fight CRC Biosimilars Mini or NRAS mutation Magazine. • Regorafenib (Stivarga®) is a small molecule drug to inhibit cell growth by • Panitumumab (Vectibix®) is a interfering with the internal workings of monoclonal antibody used to inhibit the cell cell growth for patients without a KRAS or NRAS mutation. In June 2017 the • Ramucirumab (Cyramza®) is a FDA announced the expanded use of monoclonal antibody used to block panitumumab to include wild-type RAS the growth and development of metastatic colorectal cancer (mCRC), blood vessels which is defined as wild-type in both • Larotrectinib (Vitrakvi®) and entrectinib KRAS and NRAS. It can also now be used (Rozlytrek®) is indicated for patients as first-line treatment in combination who have an NTRK gene fusion. Talk to with FOLFOX chemotherapy. your doctor about biomarker testing to • Bevacizumab-awwb; ABP-215 (Mvasi®) learn if this is a treatment option for you. is approved to treat adult cancer types, • bevacizumab-bvxr (Zirabev®) is including CRC. It is a biosimilar of approved for five different cancer types bevacizumab. Mvasi® is approved for the including metastatic colorectal cancer. following CRC indications: It is a biosimilar of Avastin®.

40 • Your Guide In The Fight • Part 1 • Most patients with stage IV colorectal cancer receive a combination of FOLFOX and bevacizumab (Avastin®) as their first-line treatment, but other options exist. FOLFOX or FOLFIRI chemotherapy or cetuximab (Erbitux®) or panitumumab (Vectibix®) targeted therapy can be used for patients with non-mutated KRAS or NRAS genes. You and your doctor will work together to determine the best treatment plan for you, which may include a clinical trial.

For information on payment assistance, call The TRAK Assist(™) patient support program 1-844-634-TRAK (8725)

IMMUNOTHERAPIES ALL CRC PATIENTS SHOULD KNOW THEIR MSI/MMR STATUS! Immunotherapy for colorectal cancer has been shown to be effective in a small subset of patients with a certain biomarker: microsatellite-instability or mismatch repair deficiency. • Pembrolizumab (Keytruda®) is an option for patients who have the microsatellite instable-high (MSI-H) or deficient mismatch repair (dMMR) biomarkers. This treatment is indicated for adult and pediatric patients with unresectable or metastatic solid tumors that have been identified as having a biomarker referred to as MSI-H or dMMR, including patients with solid tumors that have progressed following prior treatment and who have no alternative treatment options. About 4% of all patients with metastatic colorectal cancer are MSI-high or dMMR. • Nivolumab (Opdivo®) is approved for use in microsatellite instability high (MSI-H) or mismatch repair deficient (dMMR) metastatic colorectal cancer (mCRC). Nivolumab has been approved for mCRC patients whose cancer either progressed after being treated with a fluoropyrimidine, oxaliplatin, and irinotecan, or did not respond to those treatments. • Ipilimumab (Yervoy®) This drug may be used in combination with nivolumab as a treatment option for metastatic colorectal cancer (mCRC) with microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR) cancer following the progression on a fluoropyrimidine, oxaliplatin, and irinotecan.

• Diagnosis & Treatment • 41 5 UNDERSTANDING YOUR TREATMENT OPTIONS · continued

QUESTIONS TO ASK IF YOU HAVE STAGE IV OR RECURRENT CRC

Treatment for stage IV or recurrent colorectal cancer is complex, and generally requires consultation with medical, surgical, and radiological doctors.

Q: What is the standard treatment for someone in my situation? What do you recommend?

Q: Can my tumors be treated surgically or with a locally ablative procedure?

Q: What will my treatment schedule look like?

Q: Am I eligible for a clinical trial? If yes, do you feel that would be a good choice for me?

Q: What can be done to remove or treat my metastatic tumors?

Q: Is there a way to determine whether specific drugs will be effective in treating my cancer? Should my tumor be genetically tested?

Q: How long will I receive this treatment?

Q: What are the short- and long-term side effects of the treatment you are recommending? What can we do to minimize my side effects?

Q: When I am in treatment and experiencing side effects, what side effects should trigger a call to your office (for example, a fever > 100.5, diarrhea > 4 times/day) and which can wait for my next visit?

Q: How will my health be monitored during treatment?

Q: When will we know if the treatment is working?

Q: If this treatment stops working for me, what’s the next option?

Q: Do you have any recommendations for support groups?

Ultimately, the decision for which treatment you receive is up to you. Make the decision in partnership with your treatment team. Make sure to track your treatment history once you begin!

42 • Your Guide In The Fight • Part 1 • Ultimately, the decision for which treatment you receive is up to you. Make the decision in partnership with your treatment team. Make sure to track your treatment history once you begin!

• Diagnosis & Treatment • 43 MEDICAL ADVISORY BOARD REVIEWERS All medically-reviewed content in Your Guide in the Fight was written and edited by Fight Colorectal Cancer.

Dennis J. Ahnen, M.D. Richard M. Goldberg, M.D. University of Colorado Ohio State University Medical Center Hereditary Cancer Clinic Edith Mitchell, M.D., FACP Al B. Benson III, M.D., FACP Thomas Jefferson University Northwestern University Joel E. Tepper, M.D. Dustin Deming, M.D. University of North Carolina University of Wisconsin School of Medicine Carbone Cancer Center Radiation Oncology

View all Medical Advisory Board members at: FightCRC.org/MAB

ADDITIONAL REVIEWERS

Wells Messersmith, M.D. Jessica Martin, Ph.D. Professor and Co-Division Head, Division of Fight Colorectal Cancer Medical Oncology University of Colorado Research Advocate Christopher Lieu, M.D. Stage IV Fighter Assistant Professor, Director Colorectal Medical Oncology University of Colorado

YOUR GUIDE IN THE FIGHT DEVELOPMENT TEAM

Will Bryan Sam Monica Will Bryan Design Brand Manager Anjee Davis, MPPA Nancy Roach President Founder Andrea (Andi) Dwyer Erica Weiss, MPH, MSUP The Colorado School of Public Health Plain Language Health Writer University of Colorado Cancer Center Sharyn Worrall, MPH Elizabeth Fisher, MBA Senior Manager of Education and Research Project Manager Nancy Levesque Director of Communications

PHOTO CREDITS: Brett Flashnick, Ryan Hollis, Travis Howard, Brian Threlkeld ADDITIONAL RESOURCES

PATIENT WEBINARS PODCASTS Fight CRC hosts free patient Fight CRC’s educational podcasts webinars featuring leading put a stop to “taboo-ty” topics experts from across and discuss real issues impacting the country. colorectal cancer patients.

View all resources at: FightCRC.org/Resources

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SCREENING Screening Cancer Colorectal Guide to Your SKIN TOXICITY T BIOSIMILARS Drug Types: Between the Differences Down Breaking Drugs Generic, and Brand-Name Biologic, Biosimilar, and More Know to Want You All the Things and Genetic Testing Cancer Colorectal Hereditary Understanding SIDE EFFECTS Treatment Cancer During Colorectal Managing Side Effects G

Screening Skin Toxicity Biosimilars Clinical Trials Genetics Side Effects

Download or order copies at: FightCRC.org/Resources

MADE POSSIBLE

Your Guide in the Fight was made possible thanks to the support of the following organizations: VER 4

134 Park Central Square, Suite 210 • Springfield, MO 65806 ©2019 Fight Colorectal Cancer. All rights reserved. All rights Cancer. Colorectal Fight ©2019 2 & SURVIVORSHIP TREATMENT, SIDE EFFECTS, SIDE EFFECTS, TREATMENT,

STAGE III & STAGE IV COLORECTAL CANCER YOUR GUIDE IN THE FIGHT If you have recently been diagnosed with stage III or IV colorectal cancer (CRC), or have a loved one with the disease, this guide will give you invaluable information about how to interpret the diagnosis, realize your treatment options, and plan your path. You have options, and we will help you navigate the many decisions you will need to make.

Your Guide in the Fight is a 3-part book designed to empower and point you towards trusted, credible resources.

Your Guide in the Fight offers information, tips, and tools to: DISCLAIMER • Navigate your cancer treatment The information and services provided • Help you gather information by Fight Colorectal Cancer are for for treatment general informational purposes only and are not intended to be substitutes for • Provide you with tips to manage professional medical advice, diagnoses, symptoms or treatment. If you are ill, or suspect • Direct you to resources for personal that you are ill, see a doctor immediately. strength, organization, and support In an emergency, call 911 or go to • Help you manage details the nearest emergency room. Fight from diagnosis to survivorship Colorectal Cancer never recommends or endorses any specific physicians, products, or treatments for any condition.

FIGHT COLORECTAL CANCER LOOK FOR THE ICONS We FIGHT to cure colorectal cancer and serve as relentless champions of hope Tips and Tricks for all affected by this disease through informed patient support, impactful policy change, and breakthrough Additional Resources research endeavors. More information can be found on another page or part

COVER: Diego Davis-Olegario | Stage III survivor TREATMENT SIDE EFFECTS 2 & SURVIVORSHIP

PAGE • TABLE OF CONTENTS 3 • Side Effects 15 • Palliative Care 17 • Asking for Help 21 • Staying Strong Through the Fight 26 • Post-Treatment Follow-up & Survivorship 32 • Family History and Genetics 35 • Strength From Others

WHAT YOU WILL KNOW AFTER READING PART 2 • WHAT SIDE EFFECTS I MAY FACE • TIPS FOR MANAGING SIDE EFFECTS AND RESOURCES TO HELP • SURVIVORSHIP CARE PLANNING

• MY SCREENING FOLLOW-UP POST TREATMENT

O© . d  d   o    dC PHOT duar ocates 1 Not everyone experiences the same side effects, nor are side effects experienced in the same way.

Traci Bryan Dawn Blatt CRC Caregiver Stage III survivor 2

SIDE EFFECTS 1

Talk with your healthcare team about possible side effects before beginning treatment and during treatment.

Not everyone experiences MANAGING TREATMENT Tell you doctor about your the same side effects, nor SIDE EFFECTS fatigue as they may request are side effects experienced blood tests, or recommend in the same way. Cancer-Related Fatigue things you can do to manage it. Palliative care is a way Cancer-related fatigue to receive ongoing support (CRF) is common among See the list of tips and symptom management cancer patients. For many it on page 4. throughout your treatment, goes away after treatment and following treatment is completed, but for some, completion. It can help you CRF lasts for months or Download Fight gain strength to carry on years after treatment ends. CRC’s Side Effects Mini with daily life, improve your Magazine for more CRF is more than just being sense of control, and help information on how to tired. Some people explain you tolerate treatments. manage treatment it as a sense of heaviness. There are many ways FightCRC.org/Resources The impact of this side for you and your care team effect can touch many to manage side effects. aspects of your quality of The next few pages outline life, including your physical, some of the most common psychological, and social side effects experienced by well-being. It may limit colorectal cancer patients your ability to participate and survivors. in day-to-day activities and SIDE EFFECTS Treatment Cancer During Colorectal Managing Side Effects activities you enjoy doing.

• Treatment, Side Effects, & Survivorship • 3 1 SIDE EFFECTS · continued

TIPS TO MANAGE FATIGUE

• Plan your activities for times • Eat healthy foods - ask your of the day when you have the treatment team to connect you most energy. with a nutritionist or registered • Exercise regularly. Take short dietician who can help you choose walks or do upper body strength foods to increase your energy. exercises. Exercise has been shown • Use relaxation techniques like to help fight cancer-related fatigue. meditation or yoga. • Take short naps during the day • Make sure your treatment when needed. Avoid taking naps in team checks your blood counts the late afternoon. for anemia. • Aim to sleep at least 8 hours • Relax before bed and prepare at night. Avoid caffeine for 8 hours your body for sleep. Do not watch before bedtime. television or surf the web.

Increased Risk of Infection/Fever Chemotherapy can decrease your white $$ TIPS TO PREVENT INFECTIONS blood cell count, which increases your risk for infection. Infections can land you in the • Wash your hands frequently hospital, and may be life threatening. • Do not cut your cuticles A fever is a sign of infection. Take your • Avoid being near people who temperature anytime you feel warm and contact your healthcare team if your are sick temperature is above 100.5 F so they • Stay out of crowds can evaluate your need for further medical assistance and, potentially, antibiotics. • Be careful to prevent cuts. If you Unless approved by your doctor, do not do cut yourself, clean the area take any over the counter medications, such as acetaminophen or ibuprofen, well and apply an antiseptic that may mask the fever. • Avoid raw fish and undercooked If your white blood count is too low, you meats and eggs. Wash fruits may need to wait for it to go up before and veggies. your next treatment. • Avoid community swimming Diarrhea pools and hot tubs

Signs of diarrhea include frequent bowel • Avoid community gym equipment movements that are soft, loose, or watery. or be sure to clean the equipment It can result from chemotherapy treatments, colon surgery, radiation very well before use

treatment, infections, or diet.

 !" #h $i h% & ' % t & 4 • Y ar Exercise has been shown to help fight cancer-related fatigue.

• Treatment, Side Effects, & Survivorship • 5 1 SIDE EFFECTS · continued

Adk your doctor to prescribe medications TIPS TO MANAGE DIARRHEA to address diarrhea before it develops. This will ensure you’re prepared. Let your doctor • Sip warm liquids slowly throughout know if you experience diarrhea as soon as the day. Avoid large quantities at possible so they can help guide your next once. Avoid alcohol and caffeine. steps in how to manage this side effect. • Discuss anti-diarrhea Before beginning chemotherapy, get medications with your doctor a sense of your current pattern of daily stools—number and consistency—to use as • Eat small, frequent meals and a baseline. If you have an ostomy, note the snacks. Snack on dry, salty foods like crackers and toast. Eat consistency and amount of daily output. yogurt with active cultures and Symptoms of complicated, severe diarrhea foods with soluble fiber (oatmeal, (which may result from irinotecan Camptosar® oat bran, bananas, etc.). or other treatments) require a call to your • Discuss a diet plan with a doctor. Severe symptoms include: registered dietitian (RD) • 7 or more loose or watery stools a day • A fiber supplement like • Abdominal cramping Metamucil may help • Nausea and vomiting • Avoid hard-to-digest foods like • Fever popcorn, raw vegetable, and • Bleeding or blood in the stool “gassy” vegetables. Avoid spicy, greasy, and high-sugar foods. • Dehydration • Feeling weak or dizzy when standing • Lie down immediately after eating Abdominal cramping is an early sign that diarrhea is complicated and needs aggressive treatment. Contact your doctor immediately TIPS TO MANAGE NEUROPATHY if you experience abdominal cramping. • Wear scarves or face masks If diarrhea doesn’t improve after 24 to 48 outdoors in cold weather hours, or it gets worse, contact your doctor. • Wear gloves and warm socks Neuropathy or Nerve Changes Neuropathy is common when receiving • Avoid eating or drinking cold foods. chemotherapy. Symptoms include numbness Eat room temperature food. or tingling in your hands or feet, a loss of • Avoid excessive air conditioning sensation, shooting pain, loss of balance, aching muscles, problems with finger dexterity, and forgetfulness. • Use handrails and avoid clutter that may cause you to stumble or trip • Protect your hands when getting items out of the refrigerator

6 • Your Guide In The Fight • Part 2 • w

A unique symptom you may experience with NEUROPATHY TIPS neuropathy is an extreme sensitivity to cold. from Dana Cardinas, Oxaliplatin, a drug used in the FOLFOX Doctor of Podiatric Medicine chemotherapy treatment, is known to cause acute (DPM), FACFAS and stage IIIc or chronic nerve damage. While acute neuropathy colon cancer survivor can be managed by avoiding cold things, chronic or peripheral neuropathy gets worse with Things to consider before cumulative doses of oxaliplatin. It tends to fade treatment begins: after treatment when the drug ends, but may take 18 months to 2 years to go away. For some people, Understand that cold sensitivity these symptoms continue for many years. is temporary and although unpleasant, will go away Types of Neuropathy: Discuss with your oncologist nerve protective supplements that are safe Acute oxaliplatin-induced neuropathy – for you to take during treatment • Begins shortly after an infusion of oxaliplatin Exercise to tolerance during and gets better within a few days treatment • Triggered by eating, drinking or touching something cold, or breathing cold air Keep a log of all your nerve symptoms so you can discuss • Some patients experience sharp pain them during your oncology visits in their mouth or jaw when they take a bite of cold food Educate yourself on all the • Some patients feel like their throat is closing potential nerve symptoms you and they cannot breathe, although breathing might experience is not actually affected Things to consider when Chronic peripheral neuropathy – managing neuropathy: • The risk of a longer-lasting sensory neuropathy in your hands and feet increases as the If you are experiencing painful amount of oxaliplatin increases in your body neuropathy, combining prescription medications like • Feeling “pins and needles” or numbness gabapentin with exercise or • For some patients, neuropathy can cause devices that increase blood flow pain and difficulty with daily life, including to the nerves is more effective walking or doing small tasks with their than taking a medication alone. fingers like buttoning a shirt If you have numbness and coordination symptoms, then nerve glide exercises and focusing on balance and strength will help you more. The key to improving your neuropathy is movement. The more you can move, the more blood flow to the nerves, the happier your nerves will be.

• Treatment, Side Effects, & Survivorship • 7 1 SIDE EFFECTS · continued

Keep your doctor and health care team updated on your neuropathy. $$ TREATING MOUTH SORES Use a notebook to track how you feel There are several “magic” and let your doctor know if neuropathy mouthwashes that can help with gets worse. pain and healing if sores do develop; however, their effectiveness is Be prepared for your first oxaliplatin unclear. If your doctor suggests treatments by wearing gloves, a shawl these mouthwashes may help, they or blanket, warm socks, and avoiding will write out the recommended cold foods/drinks. ingredients and the amount of each ingredient for you. Antibiotics may High Blood Pressure be required if sores become infected. Remember that it is important to If you’re taking bevacizumab, aflibercept, maintain good dental care while ramucirumab, or regorafenib, you may in treatment. experience high blood pressure. High blood pressure is routinely managed with appropriate medication. Treatment may be paused or halted if blood pressure $$ TIPS TO MANAGE HAND-FOOT increases too much. SYNDROME Mouth Sores (Mucositis) • Heavy emollients are suggested, especially urea based products Good dental care is key and regular standard dental visits. Mouth sores • Avoid alcohol based cleansers are inflammation and ulceration in • Petroleum jelly, over-the- the mouth as a result of some cancer counter moisturizing creams, treatments. This side effect can be very or prescription ointments may uncomfortable, however, it is important help healing to maintain good dental care and regular • Some patients find relief from standard dental visits while undergoing petroleum jelly on the skin cancer treament. under white cotton gloves or wearing socks overnight Hand-Foot Syndrome • If you use petroleum jelly Hand-foot syndrome can occur with or other moisturizers, be sure some types of chemotherapy, like 5-FU, to avoid infection by thoroughly capecitabine or regorafenib. Signs of it cleansing the area the next morning. include red, cracked, peeling, or painful Leaving thick moisturizers on your skin. This condition is not life threatening skin or on open wounds can lead and it gets better once you stop taking the to infections drugs. If you experience early signs • Avoid long exposure of feet and of hand-foot syndrome, you can reduce hands to hot water (like washing the dose of your treatment to stay dishes or long showers) on schedule.

8 • Your Guide In The Fight • Part 2 • • Treatment, Side Effects, & Survivorship • 9 Thehe rash, which commonly occurs on the face and chest, can be painful and itchy, or cause a burning, tingling sensation.

M()* ++ a Bahr Stage III fighter 10 Rashes and Skin Toxicity The oral targeted therapy, regorafenib, may also cause an itchy rash. Talk with Targeted therapies (drugs that interfere your doctor if this happens to see if with the growth and spread of cancer) specific creams or lotions can help. tend to cause skin toxicity. Epidermal growth factor receptor inhibitor drugs Wound Healing (EGFR-i), like cetuximab or panitumumab are types of targeted therapies that can Bevacizumab, aflibercept, and regorafenib cause this side effect. can slow the healing of wounds. These drugs should be stopped at least two The rash commonly occurs on the face and weeks before surgery. Talk to your care chest, but can also present on other body team about these medications and how parts. It can be painful and itchy, or cause they may affect your healing after surgery. a burning, tingling sensation. Your doctor may prescribe a medicated cream to Fecal Incontinence, Adhesions control itching and ease discomfort, or an antibiotic if infection becomes a concern. (Rectal Cancer) You might be referred to a dermatologist. Radiation treatments are carefully planned If the rash becomes intolerable, you and to target the tumor and surrounding your doctor may decide to lower your rectum; however, it’s almost impossible treatment dose. to avoid damaging healthy tissue. If you experience redness and skin irritation, Never stop taking or reduce your medication ask your radiation oncologist for creams without your doctor’s approval. If you to soothe burns. experience severe skin rashes, talk to your doctor about ways to manage the rash. Serious irritation of rectal tissues can cause diarrhea, rectal bleeding, painful bowel movements, incontinence, or bladder TIPS ON MANAGING EGFR RASH irritation causing frequent urination, blood in the urine, or burning during urination. If • Moisturize often and apply topical itch you experience these side effects, consult ointments or creams your doctor. There are medical and lifestyle • Keep nails short and clean options that can minimize the impact of fecal incontinence and adhesions. • Wear sunscreen and keep your skin covered • Opt for fragrance- VOCABULARY free products • Fecal incontinence: the inability For more to control your bowel movements information, and for tips from other • Adhesions: scar tissue. Adhesions

patients, check out in the colon can cause partial or our Skin Toxicity complete blockage of the colon, resources at resulting in abdominal pain and SKIN TOXICITY FightCRC.org/SkinTox the Skin of Managing Side Effects for Tips swelling, nausea and vomiting.

• Treatment, Side Effects, & Survivorship • 11 w

1 WHEN SHOULD I CALL SIDE EFFECTS · continued THE DOCTOR? Chemo-Brain It’s important to keep your care team up to date It is estimated that 1 in 5 people who on all of your side effects. It’s also important to take chemotherapy for cancer experience know when to seek immediate medical attention. “chemo-brain.” This is described as a Although rare, there are instances when patients hazy experience with symptoms such develop severe or life-threatening toxicities within as forgetfulness, difficulty finding the the first few days of receiving treatment of 5-FU right word, and difficulty multi-tasking or or capecitabine (Xeloda®). concentrating. Some people regain mental clarity over time, while others do not. Side effects that include the following require a call to the doctor or the ER: If you are having more serious side Altered mental state or coma effects like visual loss, change in gait, or unrelenting headache, notify your doctor. Irregular heartbeat, heart attack or other cardiac symptoms If you experience chemo-brain, there are Unusually severe gastrointestinal techniques you can use that may help you pain and diarrhea remember things and stay on task. Inability to eat due to nausea Vomiting more than 6 times TIPS AND TRICKS TO HELP WITH YOUR MEMORY Blood in stool (stool could appear black and tar-like) • Keep your notebook handy and write lists Blood in vomit (vomit could appear very dark in color or look like coffee grounds) • Schedule appointments and medications into your calendar Severe mucositis (oral and/or anal) (ideally in a phone with a that affects daily activity calendar alarm) Fever over 100.5 degrees F • Keep consistent habits Any unusual side effects that your (for example, place your keys treatment team did not tell you about in the same spot each day) • Ask for help when you need it The symptoms above differ from the common side effects experienced by CRC patients and can be • Get plenty of rest a sign of early-onset severe toxicity. Early-onset • Contact a social worker severe toxicity usually occurs during or shortly for guidance after the first or second round of treatment. Call your doctor as soon as possible if you experience moderate to severe side effects. If you are Depression, Anxiety, Post- experiencing early-onset severe toxicity, uridine Traumatic Stress Disorder, triacetate (Vistogard®) is a medication that can Fear of Recurrence reduce further toxicity from occurring if it is administered within 96 hours of your last 5-FU A cancer diagnosis affects more than the or Xeloda® treatment. physical body – it can also cause mental health side effects that are important Pay attention to your side effects. Track them to recognize and treat. Many patients diligently and report to your doctor. If you have side effects that are severe or unexpected, call your doctor.

12 • Your Guide In The Fight • Part 2 • and survivors experience varied levels always easy to treat, however, there is of depression and anxiety, and many help available. survivors experience Post-Traumatic Ask your healthcare team to put you in Stress Disorder (PTSD) and fears of contact with a mental health professional cancer recurrence. Some of the common like a social worker, therapist, or psycho- signs of depression include: persistent oncologist. sadness, empty feelings, loss of interest in daily activities, fatigue, feelings of guilt, If you need help finding a professional worthlessness, loss of concentration, in your area, or would like to speak to sleep problems, suicidal thoughts, and someone about your concerns, call our hopelessness. These side effects are not toll-free Resource Line: 1-877-427-2111

COMPLEMENTARY AND Before you begin any alternative treatments, you need to understand how ALTERNATIVE APPROACHES, they might affect your current treatment. AND INTEGRATIVE MEDICINE If you are considering CAM, discuss with your doctor first. Many patients look for approaches to “add to” or “complement” treatment For tips on talking to your doctor for colorectal cancer (CRC), especially about CAM, visit: when looking for ways to feel better. Cancer.gov/About-Cancer/Treatment/CAM Complementary and alternative medicine (CAM) approaches are commonly used by patient, as they may increase quality of life. Some examples include yoga, massage • Complementary medicine is used therapy, acupuncture, and tai chi. together with conventional medicine. An example of a complementary Many cancer centers now have healthcare therapy is using aromatherapy providers on staff who have a CAM to help lessen your discomfort specialty (like massage or acupuncture, following surgery. for example), and may even have • Alternative medicine is used in oncologists or other medical doctors place of conventional medicine. who specialize in integrative medicine. An example of an alternative Some CAM approaches include supplements therapy is using a special diet to and pills and are not recommended to treat cancer instead of undergoing treat colon or rectal cancer. So far, no surgery, radiation, or chemotherapy alternative method has been proven that has been recommended by a either safe or effective by conclusive conventional doctor. scientific evidence. CAM approaches may • Integrative medicine combines be dangerous or even deadly; some are treatments from conventional harmful to patients undergoing standard medicine and CAM, for which there is treatment for cancer. Others may interfere some high-quality scientific evidence with the action of chemotherapy or drugs of safety and effectiveness. used to treat side effects.

• Treatment, Side Effects, & Survivorship • 13 1 SIDE EFFECTS · continued

Examples of CAM methods that have proven beneficial vs. harmful: $$ ASK YOURSELF: IS CAM RIGHT FOR ME? BENEFICIAL: • Is it safe? How do you know it’s safe? • Acupuncture has been shown to help patients reduce feelings of pain and • Is there any evidence that it nausea, and may improve joint mobility is effective? • What’s the evidence? Is it a clinical • Meditation and guided imagery can trial or simply anecdotal stories? provide comfort and reduce stress Is evidence based on human tests? • Tai chi is beneficial for relieving pain • Am I certain that what is listed and improving the ability to walk on the label is actually what is and move in the bottle? • Did I talk to my doctor? Did they support the use of this type of therapy?

Examples of mind-body practices POTENTIALLY HARMFUL: that can reduce stress and anxiety:

• St. John’s Wort, an herb sometimes Meditation: Focused breathing taken for depression, can interfere or repetition of words or with the cancer treatment irinotecan phrases to quiet the mind

• The herbs comfrey and kava can cause Hypnosis: A state of relaxed serious harm to the liver and focused attention in which the patient concentrates on • Patients in treatment have been advised a certain feeling, idea, or to not take fish oil supplements, as this suggestion to aid in healing can interfere with the effectiveness of chemotherapy Yoga: Systems of stretches and poses with special • Colon hydrotherapy (also known as attention given to breathing colon irrigation, colon cleansing, or high enema) uses more than 20 gallons Imagery: Imagining scenes, of water inserted through the rectum pictures or experiences to is used to gently “cleanse” the large help the body heal intestine. This practice has no scientific credibility and could cause perforation, Creative outlets: Art, music, dehydration, and infection. or dance for example

14 • Your Guide In The Fight • Part 2 •

PALLIATIVE CARE 2

Palliative care is designed to help improve your quality of life.

PALLIATIVE CARE IS A PATIENT- AND When is the right time to seek family-centered system of medical, palliative care? physical and emotional support provided by a team of specialists for people with The earlier you ask your care team about advanced illness who need relief from palliative care, the better. Palliative care is side effects. appropriate for any diagnosis, at any stage in a serious disease, and at any age. You Palliative care provides ongoing support may consider talking to your doctor about throughout your treatment and following palliative care if you: treatment completion. It focuses on providing aggressive symptom • Visit the hospital or ER regularly management for symptoms such as pain, • Have challenging symptoms shortness of breath, fatigue, constipation, (physical and/or psychosocial) nausea, loss of appetite, difficulty sleeping, and depression. • Would like help in making difficult decisions This type of care is for anyone at any stage, • Have a hard time taking care of yourself and can start at the time of diagnosis. It is designed to help you gain strength to carry • Are concerned your caregiver is on with daily life, improve your sense of experiencing distress control, and allow you to tolerate treatments. Consulting a palliative care expert can help Even if you are still seeking disease- you become more clear about what you directed treatment, ask if your hospital, need to achieve greater quality of life. cancer center, or long-term care facility provides palliative care. You might even have Palliative care also supports the option to receive palliative care at home. the caregiver.

• Treatment, Side Effects, & Survivorship • 15 2 PALLIATIVE CARE · continued

Common Questions difficulty sleeping. Palliative care helps you carry on with your daily life. It improves About Palliative Care your ability to go through medical treatments. It helps you better understand WHERE DO I RECEIVE your condition and your choices for 1 PALLIATIVE CARE? medical care. In short, you can expect the best possible quality of life Palliative care can be provided in the hospital, outpatient clinic, and at home. HOW DOES PALLIATIVE CARE 5 WORK WITH MY OWN DOCTOR? DOES MY INSURANCE PAY 2 FOR PALLIATIVE CARE? The palliative care team works in partnership with other doctors to provide Most insurance plans, including Medicare an extra layer of support for you and and Medicaid, cover palliative care. your family.

HOW DO I KNOW IF PALLIATIVE HOW DO I GET 3 CARE IS RIGHT FOR ME? 6 PALLIATIVE CARE? Palliative care may be right for you if you suffer from pain, stress or other symptoms You have to ask for it! Just tell your doctors due to a serious illness. and nurses that you would like to see the palliative care team. You can also visit the WHAT CAN I EXPECT FROM Provider Directory on GetPalliativeCare.org. 4 PALLIATIVE CARE?

You can expect relief from symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and

QUALITY OF LIFE (QOL) Simply put, QOL it is your standard of health, overall enjoyment of your life, sense of well-being, and ability to engage in the activities you enjoy. There are four major areas of wellbeing associated with QOL: physical, social, psychological, and spiritual.

16 • Your Guide In The Fight • Part 2 • ASKING FOR HELP 3

Keeping organized can help you stay on track with cancer treatment, especially while balancing your work and home life.

ASKING FOR HELP IS Some examples might reach out to family and a great thing, and so is include: friends for their help with accepting help when manageable requests it’s offered. After your ∙ Can I give you a small and if you need additional diagnosis, people may ask list of things I need from assistance. you how they can help. It the store? may feel strange to accept ∙ Can you pick up my dry help - but try to remember Examples of the type of help cleaning on Tuesday you might need: that people are asking how or Wednesday? they can help because they Medical care needs: care about you and they ∙ Can you vacuum my house driving to doctor’s WANT to help. Consider one day next week? appointments, staying on having a list of responses There are several websites track with medications, ready beforehand so that and planning tools available managing side effects when the question arises, to recruit friends and family Home care needs: you’re prepared for the to help, but you can also meals, cleaning, opportunity! begin by simply writing driving, childcare, Break down your needs down things you’d like help home maintenance into small, manageable with and thinking about Practical support: parts, as this can help you who you might ask calls to insurance, legal feel less overwhelmed and for support. or financial assistance, more in control of your to- Your first call for support paying bills do list. can be to your nurse Emotional support: or social worker who coping with depression, will direct you to local finding fun, just talking resources. You can also

• Treatment, Side Effects, & Survivorship • 17 3 ASKING FOR HELP · continued

CANCER SUPPORT COLORECTAL CANCER ORGANIZATIONS SUPPORT American Cancer Society: Fight Colorectal Cancer: Cancer.org FightCRC.org or call 1.800.227.2345 (local & national support services) Fight CRC’s Inspire Community: FightCRC.org/Inspire Advocacy Connector: AdvocacyConnector.com Colorectal Cancer Alliance: CCAlliance.org (find the type of help you need) Colon Cancer Coalition/GYRIG: CancerCare: ColonCancerCoalition.org CancerCare.org (counseling, support groups, ColonTown: education & financial assistance) ColonTown.org Cancer Support Community: Colon Club: CancerSupportCommunity.org ColonClub.org (local & national support services) LIVESTRONG: Fight CRC Resource Line/ LiveStrong.org Community Cancer Support call 1.855.220.7777 Helpline: (several programs to help patients) Call 1-877-427-2111 from 9 a.m. – 9 p.m. ET Monday through Friday Stupid Cancer: to get live assistance. The call line is StupidCancer.org available in more than 200 languages. (programs for young adults facing cancer) Michael’s Mission: MichaelsMission.org

NO, -/

18 • Your Guide In The Fight • Part 2 • Asking for help is a great thing, and so is accepting help when it’s offered.

• Treatment, Side Effects, & Survivorship • 19 ResearchResearch shows that early identification of emotional distress and follow-up care helps everyone involved.

0risha Mouzon Stage III survivor 20 STAYING STRONG THROUGH THE FIGHT4

No one expects a cancer diagnosis.

SUDDENLY YOU HAVE to think about Research shows that early things like, “How is this going to identification of emotional distress impact my family?”, “Will I be able to and follow-up care (such as counseling work during treatment?”, and “Will the and support services) helps everyone cancer kill me?” With all this stress, involved. Find help if you need it. There most patients and their loved ones are organizations that offer support experience feelings of depression, for emotional stress that results from anxiety, and distress after a diagnosis. the diagnosis, insurance or financial Who wouldn’t? assistance, and even transportation to and from appointments. Check out the list of resources in the back of Part 3 for some organizations to get you started.

• Treatment, Side Effects, & Survivorship • 21 4 STAYING SRONG THROUGH THE FIGHT · continued

DIET AND NUTRITION TIPS FOR COPING As you move from diagnosis to treatment and surgery, your dietary needs will change. • If you’re feeling overwhelmed, During treatment, you may not feel like stressed or sad, ask your eating or drinking, but you need to make healthcare team for a referral sure you are getting proper nutrients and to a counselor and emotional combating unwanted weight loss. Foods support service programs may taste differently, and side effects like • Contact a social worker experienced mouth sores or cold sensitivity might make with oncology it hard to eat. • Join a support group in person After surgery, you will be on a “low or online residue” diet, which means a diet low in fiber to minimize the amount of work • Ask your doctor about medications for your colon and rectum. Think white that can help bread, not whole wheat! It is common to experience problems with diarrhea as your • Focus on living in the moment – body heals, and it might take several weeks on the things in your life you can or longer for your colon to start working control. Avoid unhelpful speculation normally again. Talk to a nutritionist who about unknowns can help you plan meals during this time. • Use relaxation techniques such as deep breathing when you feel panic • Write your questions, thoughts, and concerns in a notebook and keep it with you at all times (a smart phone has many options for note-taking too)

NOTES RESOURCES FOR COPING • Check out the Cancer Support Community (CancerSupport Community.org) or CancerCare (CancerCare.org). They have phone lines staffed with trained mental health professionals who can help you find the support and services you need. • Contact the Patient Advocate Foundation (PatientAdvocate.org) for help if you need co-pay assistance or if you can’t afford medical care.

22 • Your Guide In The Fight • Part 2 • TIPS FOR EATING TIPS FOR EATING AND AFTER SURGERY DRINKING WHEN YOU DON’T WANT TO • Request a consultation with the hospital’s nutrition team • Eat small meals or registered dietician • If you are not taking FOLFOX • Talk to your nurse before leaving (a type of chemotherapy), suck the hospital and request a list on ice chips or sip fruit smoothies of what you can and cannot eat all day long to avoid dehydration. If you are on FOLFOX, stay away • Look at the American Cancer from cold drinks and stick to room Society’s “Low Residue Diet” temperature beverages information – if you don’t have Internet access, ask a friend or • Talk to a nurse if you are too your care team to print a copy. nauseated to eat or drink. It has a helpful list of foods to eat Medications to curb your nausea and foods to avoid may be available • Don’t be shy about talking with • If people offer to cook for you, your care team about diarrhea, say YES and give them some ideas as sometimes this can be improved of what you can eat by dietary changes • If you get an urge for a certain food, go for it

STAYING HYDRATED Staying hydrated is critical to your overall To avoid dehydration, suck on ice chips health. If you are having problems with throughout the day and keep room vomiting and diarrhea, or if you are not temperature water nearby at all times. drinking enough fluids, you are at risk for For personal help or advice, get a dehydration, which is a serious concern. referral to a nutritionist, or find a Symptoms of dehydration include: registered dietitian who has worked • Dry, sticky mouth with cancer patients. • Sleepiness or tiredness • Unquenched thirst Find a registered dietitian with • Decreased urine output - 8 hours certification in Oncology, search Academy or more without urination of Nutrition and Dietetics: EatRight.org • Dry skin • Headache, dizziness, or lightheadedness • Constipation

• Treatment, Side Effects, & Survivorship • 23 4 STAYING SRONG THROUGH THE FIGHT · continued

EXERCISE AND PHYSICAL SEX AND INTIMACY ACTIVITY Treatment for colorectal cancer Even if you feel too exhausted or (especially radiation for rectal cancer) uncomfortable to think about exercise, can make intercourse difficult, painful, do it anyway! Research repeatedly shows and undesirable—or in some cases, not that most patients benefit from moderate possible. You may feel too anxious or too exercise. Physical activity helps to maintain tired to think about sex. weight, muscle tone, and overall health. It’s possible that issues regarding sexual It reduces stress and increases energy. health and intimacy may not be brought This is true both during and after treatment. up by your healthcare team. Therefore, it is • Talk with your doctor to build an important that you bring it up if you have exercise plan—make it a priority. questions or concerns. Remember that intimacy and sexual health is about more • Start with 10-15 minutes daily (or 10 than intercourse. It is about connecting minutes a few times a day) and build with and showing someone you love them. yourself up to more (ideally 30 Because of the power of intimacy, feeling minutes per day, most days). sexually satisfied can involve something as simple as a kiss or hand holding. There • Don’t feel bad if you are too are many different ways to improve sexual exhausted to do much at tough function for both men and women if times during your treatment, it can changes happen because of treatment. be a goal for when you feel better. For more information check out • Recruit friends to keep you active Fight CRC’s resources on sexual intimacy: and motivated. Seek exercises that FightCRC.org/Intimacy are fun for you! Check out Fight CRC’s resources on exercise: FightCRC.org/Exercise QUESTIONS TO ASK YOUR DOCTOR ? ABOUT SEX: Q: Is it OK to have sex while in treatment? If not, when can I begin having sex again?

Q: Are there any types of sex I should avoid?

Q: What type of birth control should I use at this time?

Q: What else do I need to know about how my treatment will affect my sex life?

24 • Your Guide In The Fight • Part 2 • TIPS TO MANAGE PROBLEMS WITH SEX AND INTIMACY

• Talk to your partner about your • Talk with a counselor or other concerns, feelings of embarrassment, survivors about ways to manage and fears of sexual dysfunction – sexual side effects. There are sexual relationships and intimacy are often health medical professionals trained improved when we can share candidly. to help you and your partner reclaim sexual vitality after cancer treatment. • If you have rectal cancer and are receiving radiation, talk with your • Try alternative ideas for intimate radiologist about ways to minimize contact if intercourse is uncomfortable impacts on your sexual organs. or impossible. This may include more hugging and hand holding or enjoying • Ask your doctor about treatments new experiences with your partner. that may improve your sexual desire, performance or both. • Review information in the American Cancer Society’s web pages titled “Keeping Your Sex Life Going Despite Cancer Treatment.”

• Treatment, Side Effects, & Survivorship • 25 POST-TREATMENT FOLLOW-UP AND 5 SURVIVORSHIP

After treatment ends, celebrate!

ONCE ACTIVE TREATMENT time as you move into based on your cancer type ends, you may feel a variety survivorship. Colorectal (colon or rectal cancer), of emotions - joy, anger, cancer recurrence is most your individual risk for anxiety, relief. Some may common within the first 5 recurrence and time experience emotional years after treatment, so from diagnosis. distress, and others may follow-up visits will be more frequent during this time. One of the top reasons not. Either way, finishing for recurrence is lack of treatment is a milestone. Your medical oncology follow-up screening. Talk If you need to, reach out team will request physical to your healthcare team to your care team for examinations, blood work, about screening and stay additional support at this scans, and colonoscopies up to date!

26 • Your Guide In The Fight • Part 2 • Here’s a general guide on what doctors will recommend for the frequency of follow up visits and testing but remember – each person is unique.

RECOMMENDED SURVEILLANCE AFTER CURATIVE TREATMENT FOR CRC

Examination Type Year 1 Year 2 Year 3 Year 4 Year 5

Physical Every 3-6 Every 3-6 Every 3-6 Every 3-6 Every 3-6 examination months months months months months and history

CEA Every 3-6 Every 3-6 Every 6 Every 6 Every 6 (carcinoembryonic months months months months months antigen) test

Colonoscopy Colonoscopy at 1 year (rectal cancer patients: may be done (colon and at 3-6 months if it was not done before surgery). If advanced rectal cancer) adenoma found, repeat in 1 year; otherwise repeat in 3 years. If 3-year colonoscopy is clear, repeat every 5 years.

Sigmoidoscopy Every 6 months can be considered (for rectal cancer patients who received LAR)

Abdominal and Yes Yes Yes As As chest CT scan (colon determined determined and rectal cancer) by your by your doctor doctor and pelvic CT scan (recommended if primary tumor was located in the rectum)

*Adapted from the National Comprehensive Cancer Network treatment guidelines for colon and rectal cancer. These recommendations are guidelines only.

• Treatment, Side Effects, & Survivorship • 27 5 POST-TREATMENT FOLLOW-UP AND SURVIVORSHIP · continued

Your primary care provider may be the resources to help manage all psychosocial doctor who knows the most about your aspects of care, including emotional, complete medical history and follow-up social, legal, and financial needs. care. Therefore, your oncologist should give your primary care provider a copy In addition, it should include of your comprehensive care summary recommendations for healthy living, diet, for their records. Depending on the and exercise. Talk to your doctor about a treatments you received, it may be even survivorship care plan, which can give you more important to have your blood a structure to help you take care of your pressure, cholesterol, and glucose levels whole self after active treatment ends. monitored, and to have evaluations for late Visit FightCRC.org for more information and effects of treatment. survivorship care planning programs. The list of questions on page 32 and 33 are a A history of cancer adds a slight risk great place to start. for other cancers, so be sure to follow recommended cancer screening for Some of the best tools for survivorship care prostate, breast, and cervical cancer, as planning are offered online. You can even appropriate. You should also receive flu use them in partnership with your doctors. and pneumonia vaccines annually. Some popular care plans include: SURVIVORSHIP CARE PLAN • Journey Forward A survivorship care plan is a detailed plan JourneyForward.org given to a patient after treatment ends. • GI Cancers Alliance It includes a summary of all treatments LiveStrongCarePlan.org received, along with recommendations for follow-up care. It may include • The LIVESTRONG Care Plan schedules for exams and medical tests to LiveStrongCarePlan.org see if the cancer has come back or spread to another body part. A survivorship care • NCCN’s Survivorship Plan plan should also include information and NCCN.org/patients

? QUESTIONS TO ASK ABOUT YOUR SURVIVORSHIP CARE PLAN Q: Who can help me create a full record Q: What long-term and late effects can of my treatment history to date? I expect from the treatment I received? Q: Which doctors should I see for which Q: What can I do to maintain my health type of care? and well-being? Q: How often should I have routine visits? Q: If I need accommodations at work, can you help me with that? Q: What’s my schedule for post-treatment follow-up tests? Q: Can you refer me to a support group or someone to talk to for my Q: What problems should I report emotional health? to which doctor?

28 • Your Guide In The Fight • Part 2 • Survivorship care plans can give you a structure to help you take care of your whole self.

Jessica Dilts, Stage IV survivor and her caregiver Aaron Cash 29 5 POST-TREATMENT FOLLOW-UP AND SURVIVORSHIP · continued

QUESTIONS TO ASK WHEN LEAVING YOUR ? ONCOLOGY HEALTHCARE TEAM

Q: Can I have a written comprehensive care summary (also known as treatment summary care plan)?

Q: What tests were done to diagnose my colon or rectal cancer, including their results? When and where were these done?

Q: What was my diagnosis? What was the stage, location of tumors, and levels of markers such as CEA ( More information on these topics in Part 1)?

Q: What family or personal medical history is important to my diagnosis, treatment, and follow-up?

Q: What surgeries, chemotherap, and radiotherapy did I receive? What dates did these occur, what dosages did I get, and what reactions?

Q: What clinical trials was I part of?

Q: What other services did I receive — nutrition, psychological support, home healthcare, genetic counseling?

Q: What is the full contact information for the places I received treatment and who were my key providers?

Q: Who is the main person who will coordinate my follow-up care and how will I contact that person?

30 • Your Guide In The Fight • Part 2 • QUESTIONS FOR YOUR PRIMARY CARE DOCTOR ? WHEN YOU ARE DONE WITH TREATMENT:

Q: What follow-up care will I need?

Q: What’s the schedule for tests and procedures, and who will provide them?

Q: What long-term side effects could I expect from treatment?

Q: What are signs or symptoms of a possible recurrence or new cancer?

Q: When should I call my oncologist rather than my primary care doctor?

Q: What lifestyle changes can I make to help prevent recurrence?

Q: What symptoms merit a call to the doctor?

Q: Are there medicines or nutritional supplements that I should be taking?

Q: Do I need referrals to other health services such as a genetic counselor?

LIFESTYLE CHANGES • Quit smoking • Enjoy a healthy diet rich in plant- Research shows that a healthy lifestyle can decrease the risk of recurrence. Consider based foods and low in red meat the following lifestyle adjustments to and processed foods encourage good health: • Limit sun exposure • Maintain a healthy weight • Maintain a healthy support network • Stay physically active. Engage in 30 minutes of moderate to vigorous Talk with your doctor and partner activity at least five days a week with family or friends to help you stick • Reduce alcohol use to a healthy lifestyle.

• Treatment, Side Effects, & Survivorship • 31 FAMILY HISTORY AND GENETICS 6

You may know that colorectal cancer can sometimes run in families.

AS A COLORECTAL CANCER SURVIVOR, screening with their doctor. According to you are in a unique position to help the American Cancer Society, individuals your family members understand what with a family history of colorectal cancer your diagnosis may mean for them. It is diagnosed under age 60 should begin important for family members to share screening at age 40 OR 10 years prior their health history with one another to to their family member’s diagnosis – potentially identify inherited cancer risks. whichever comes first. First-degree relatives (father, mother, • For example: If you were diagnosed at sister, brother, children) of colorectal age 45 with colorectal cancer, your first- cancer survivors are at an increased risk degree relatives should begin regular of the disease and need more frequent screening (e.g. colonoscopy) at age 35 colonoscopies (every 5-10 years). The and repeat it every 5 years. screening guidelines for your first-degree relatives may begin at age 40, or younger Share your health history and have your if you were under age 60 at the time family members talk to their doctors about of your diagnosis of colorectal cancer, being screened. or if you have additional close relatives You can find a local cancer genetic with colorectal cancer. counselor at nsgc.org It is important to tell your first-degree relatives that they may be at increased risk of colorectal cancer because of your diagnosis, and that they should discuss

32 • Your Guide In The Fight • Part 2 • LYNCH SYNDROME It is now possible to test colorectal cancers referral to a cancer genetic counselor if you for Lynch syndrome – a characteristic of have a strong personal or family history of the most common form of hereditary CRC. cancers and/or colorectal polyps. The testing can be done on your tumor by the pathology laboratory and may have For more resources on Lynch Syndrome, been performed automatically after your visit AliveAndKickn, an organization colorectal surgery. Ask your doctor if dedicated to improving the lives of your tumor had a characteristic known as individuals and families affected by Lynch “defective mismatch repair.” If it did, you Syndrome and associated cancers through may need a referral to a cancer genetic research, education, and screening. counselor. If it did not, you may still need a https://aliveandkickn.org/

David Dubin and family CRC survivor with Lynch syndrome Founder of AliveAndKickn 33 6 FAMILY HISTORY AND GENETICS · continued

About 5-10% of colorectal cancers short screening tools that can be occur as a result of a hereditary used to help identify these hereditary syndrome. These syndromes can syndromes such as the one below. be characterized by clustering of If you answer “yes” to any of the colorectal cancers in several members questions, it is recommended that of the family, by multiple cancers you talk to your doctor about the in an individual, and by early age of possibility of a hereditary colorectal onset of cancers. There are some cancer syndrome.

YES NO 1. Do you have a first-degree relative (mother, father, brother, sister, or child) with any of the following conditions diagnosed before age 50? • Colon or rectal cancer

• Cancer of the uterus, ovary, stomach, small intestine, urinary tract (kidney, ureter, bladder), bile ducts, pancreas, or brain

2. Have you had any of the following conditions diagnosed before age 50: • Colon or rectal cancer

• Colon or rectal polyps

3. Do you have 3 or more relatives with a history of colon or rectal cancer? (This includes parents, brothers, sisters, children, grandparents, aunts, uncles, and cousins.)

YES to any question

Refer for additional assessment or genetic evaluation

Reprinted with permission from Patel et al. Dig Dis and Sci, 215:60:748-61; originally published by Kastronos et al (ref 1.).

34 • Your Guide In The Fight • Part 2 • STRENGTH FROM OTHERS 7

It feels good to talk with and learn from others who share similar experiences as what you’re going through.

WHEN YOU TALK TO OTHER SURVIVORS, you’ll quickly realize you’re not alone. Support groups, online message boards, blogs, and advocacy groups can connect you with people who share information, advice, and resources that matter. They can tell you about their own treatment experiences and answer questions.

The connection you feel with others who are also on this journey can make you feel GENETICS and Genetic Testing Cancer Colorectal Hereditary Understanding stronger, and the resilience you can learn from others (or give to others) is invaluable Download the Fight CRC in your fight against cancer. Genetics Mini Magazine for detailed information Read personal stories on genetics and colorectal on Fight Colorectal Cancer’s blog: cancer, and a list of genetic FightCRC.org/blog conditions associated with colorectal cancer. Join us on Facebook: FightCRC.org/GeneticsMM Facebook.com/FightCRC

Share your story! FightCRC.org/ShareYourStory

• Treatment, Side Effects, & Survivorship • 35 7 STRENGTH FROM OTHERS · continued

36 • Your Guide In The Fight • Part 2 • Gain a New Perspective on Celebrate Milestones Strength and Life Recognizing milestones can help you put Having a potentially life-threatening disease your cancer experience into perspective, often leads people to examine their lives for better or worse. As emotional as it is, and look for meaning. The fear of death it can be an opportunity to celebrate your often leads to thoughts about life’s purpose. perseverance and the fact that you are a In fact, this search for meaning may be cancer survivor. the aspect of cancer that has the most Marking milestones during and after surprisingly positive influence. cancer treatment can be done in a variety of ways. Some people find it meaningful to recognize the 1-year and 5-year cancer-free milestones. Others celebrate Change life’s priorities to... milestones and anniversary dates such as the end of chemotherapy or the anniversary of surgery. • Remember to do things that make you happy • Spend more positive time with family, friends, and loved ones • Seek a more meaningful job What do you want • Volunteer to help others to celebrate? (like becoming a colorectal cancer advocate) • The end of the first round • Focus on your health: quit smoking, of treatment eat better, exercise more • Recovery from surgery • Tap into your fighting spirit • Enjoy each moment • Your first full year after treatment • Your birthday

• EVERY day

• Treatment, Side Effects, & Survivorship • 37 7 STRENGTH FROM OTHERS · continued

SUPPORTING THE CAUSE TOGETHER Your fight against colorectal cancer doesn’t end once treatments stop and scars heal. Survivorship is an experience. As a survivor, caregiver, family member, or friend, you can raise awareness and support finding a cure for colon and rectal cancers. Climb for a Cure is a unique event designed to provide an opportunity for colorectal cancer survivors, caregivers, and advocates to commit to a physical and inspiring challenge in honor of those we have lost and those currently fighting. Climbers will find encouragement and camaraderie as they summit a beautiful peak with others who are in the fight. Even if you can’t join us in person you can still climb from home. To learn more and get started visit FightCRC.org/Climb Each March, Fight Colorectal Cancer hosts Call-on Congress, a three-day educational event open to survivors, caregivers, and their friends and families from across the country. Community leaders, scientists, and medical professionals speak on a range of topics from the federal budget and innovative research, to treatment options and preventative services. Fight CRC trains advocates to share their stories and build relationships with members of Congress. There’s also an opportunity to visit congressional offices on “Hill Day.” Advocates leave DC with a better understanding of how to push for policies that impact colorectal cancer, determined to return year after year. Even if you can’t attend Call-on Congress, we offer waysy to advocate and join the fight all year long from home. To learn more and get started visit FightCRC.org/SignUp.

38 • Your Guide In The Fight • Part 2 • “I think getting a cancer diagnosis is like being dropped into a foreign country where you don’t understand the language and don’t have a map. It takes awhile to figure out how to get around the new country. I suggest taking a deep breath and finding people who can help navigate while you learn your new language and location.”

– Nancy Roach Founder • Fight Colorectal Cancer MEDICAL ADVISORY BOARD REVIEWERS All medically-reviewed content in Your Guide in the Fight was written and edited by Fight Colorectal Cancer.

Dennis J. Ahnen, M.D. Heather Hampel, MS, CGC University of Colorado Ohio State University Hereditary Cancer Clinic Comprehensive Cancer Center Al B. Benson III, M.D., FACP Jean S. Kutner, M.D., MSPH Northwestern University University of Colorado Hospital Richard M. Goldberg, M.D. Edith Mitchell, M.D., FACP Ohio State University Medical Center Thomas Jefferson University

View all Medical Advisory Board members at: FightCRC.org/MAB

ADDITIONAL REVIEWERS

Cathy Eng, M.D., FACP, FASCO Christopher Lieu, M.D. The University of Texas Assistant Professor, Director Colorectal MD Anderson Cancer Center Medical Oncology University of Colorado Professor, Dept of GI Medical Oncology Jessica Martin, Ph.D. Wells Messersmith, M.D. Fight Colorectal Cancer Professor and Co-Division Head, Division of Research Advocate Medical Oncology University of Colorado Stage IV Fighter

YOUR GUIDE IN THE FIGHT DEVELOPMENT TEAM

Will Bryan Sam Monica Will Bryan Design Brand Manager Anjee Davis, MPPA Nancy Roach President Founder Andrea (Andi) Dwyer Erica Weiss, MPH, MSUP The Colorado School of Public Health Plain Language Health Writer University of Colorado Cancer Center Sharyn Worrall, MPH Elizabeth Fisher, MBA Senior Manager of Education & Research Project Manager Nancy Levesque Director of Communications

PHOTO CREDITS: Brett Flashnick, Ryan Hollis, Travis Howard, Brian Threlkeld

40 • Your Guide In The Fight • Part 2 • ADDITIONAL RESOURCES

PATIENT WEBINARS PODCASTS Fight CRC hosts free patient Fight CRC’s educational podcasts webinars featuring leading put a stop to “taboo-ty” topics experts from across and discuss real issues impacting the country. colorectal cancer patients.

View all resources at: FightCRC.org/Resources

; :

AL TRIALS AL TRIALS

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1 8

3

6

4

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3

6 2 CREENING

Your Guide to Colorectal Cancer Screening Cancer Colorectal Guide to Your SKIN TOXICITY the Skin of Managing Side Effects for Tips BIOSIMILARS Drug Types: Between the Differences Down Breaking Drugs Generic, and Brand-Name Biologic, Biosimilar, and More Know to Want You All the Things and Genetic Testing Cancer Colorectal Hereditary Understanding SIDE EFFECTS Treatment Cancer During Colorectal Managing Side Effects

S 1 5

Screening Skin Toxicity Biosimilars Clinical Trials Genetics Side Effects

Download or order copies at: FightCRC.org/Resources

MADE POSSIBLE Your Guide in the Fight was made possible thanks to the support of the following organizations: VER 4

134 West Park Central Square, Suite 210 • Springfield, MO 65806 ©2019 Fight Colorectal Cancer. All rights reserved. All rights Cancer. Colorectal Fight ©2019 3 PRACTICAL ISSUES, PRACTICAL SUPPORTIVE CARE, & RESOURCES CARE, SUPPORTIVE

STAGE III & STAGE IV COLORECTAL CANCER YOUR GUIDE IN THE FIGHT If you have recently been diagnosed with stage III or IV colorectal cancer (CRC), or have a loved one with the disease, this guide will give you invaluable information about how to interpret the diagnosis, realize your treatment options, and plan your path. You have options, and we will help you navigate the many decisions you will need to make.

Your Guide in the Fight is a 3-part book designed to empower and point you towards trusted, credible resources.

DISCLAIMER Your Guide in the Fight offers information, tips, and tools to: The information and services provided by Fight Colorectal Cancer are for • Navigate your cancer treatment general informational purposes only and • Help you gather information are not intended to be substitutes for for treatment professional medical advice, diagnoses, or treatment. If you are ill, or suspect • Provide you with tips to manage that you are ill, see a doctor immediately. symptoms In an emergency, call 911 or go to • Direct you to resources for personal the nearest emergency room. Fight strength, organization, and support Colorectal Cancer never recommends • Help you manage details or endorses any specific physicians, from diagnosis to survivorship products, or treatments for any condition.

FIGHT COLORECTAL CANCER LOOK FOR THE ICONS We FIGHT to cure colorectal cancer and serve as relentless champions of hope Tips and Tricks for all affected by this disease through informed patient support, impactful policy change, and breakthrough Additional Resources research endeavors. More information can be found on another page or part

COVER: Dawn Blatt | Stage III survivor PRACTICAL ISSUES, SUPPORTIVE CARE, 3 & RESOURCES

PAGE • TABLE OF CONTENTS 2 • Coping with the Cost of Care 5 • Support for Caregivers 6 • Advance Directives 9 • Tumor Banking 10 • Hospice Care 12 • End of Life Issues 14 • Glossary 18 • Resources

WHAT YOU WILL WKNOW AFTER READING PART 3 • TIPS FOR CAREGIVING AND LOVED ONES • HOW TO SEEK FINANCIAL ADVICE • HOW TO TALK TO MY KIDS ABOUT CANCER

• WHAT TO ASK MY DOCTOR ABOUT END OF LIFE CARE > P<= O: Susan Krumholz | Certified Gastroenternology Registered Nurse 1 COPING WITH THE COST OF CARE 1

Cancer care can cost a lot.

A COLORECTAL CANCER DIAGNOSIS Patient Assistance Programs means you’ll be visiting the doctor frequently Patient Assistance Programs (PAPs) and will likely be taking several medications. help patients who have difficulty paying Don’t be surprised by costs not covered for prescription medications. State by insurance. f you don’t have insurance, or governments, charitable organizations, if you have many out-of-pocket expenses and drug companies PAPs that provide (like co-pays), the groups mentioned in this discounted or free medications to those who section may be able to help. It is important financially and medically qualify. Some also to stay on top of your medical bills and help file appeals to insurance companies insurance payments. who deny coverage for certain medications. Frankly Speaking About Cancer: Nearly every drug company has a PAP Coping with the Cost of Care for the products they produce. This is a free publication by the Cancer Support Community that can help guide you General questions to ask about through the financial impact of cancer care. the cost of care: CancerSupportCommunity.org Q: What will be my treatment expenses based Patient Advocate Foundation on my insurance? The PatientAdvocate Foundation (PAF) is a non-profit organization that provides Q: Does my health insurance company need direct services to patients with chronic, life to approve any treatments before I begin? threatening, and debilitating diseases to help Q: Is the recommended treatment facility part access care and treatment recommended by of my health plan’s network? their doctors. They offer on-on-one assistance through their hotline 800.532.5274. PAF Q: If I need to be admitted to the hospital, provides copayment assistance and helps what is covered under my health insurance? people who are uninsured or underinsured find care. They also provide assistance Q: Is there a co-pay for each individual treatment? with insurance appeals. Q: Who can I talk to when I have billing questions? PatientAdvocate.org

2 • Your Guide In The Fight • Part 3 • Tracking Medical Costs & Insurance Payments MANUFACTURER DRUG Medical bills can be confusing because one ASSISTANCE PROGRAMS appointment may include separate bills BY DRUG TYPE from the doctor, the lab, a specialist, and Camptosar® (Irinotecan) prescriptions. It can be difficult to get a good PfizerRXPathways.com sense of your out-of-pocket costs. or call 1.866.706.2400 Try to keep your receipts and Explanation Eloxatin® (Oxaliplatin) of Benefits (EOBs) in one place. Keep a VisitSPConline.com notebook or binder to store notes and or call 1.888.847.4877 pertinent information about healthcare bills. Consider choosing one day each month to be Avastin® (Bevacizumab) “healthcare bill day” when you can focus on Genentech-Access.com organizing your budget and bills. If you use a or call 1.866.422.2377 health savings account (HSA) through your Erbitux® (Cetuximab) work, remember to take advantage of the LillyCares.com benefits it provides. or call 1.800.545.6962 Vectibix® (Panitumumab), NONPROFIT FINANCIAL Aranesp® (Darbepoetin), ASSISTANCE PROGRAMS Neulasta® (Peg lgrastim) AmgenAssist.com Advocacy Connector or call 1.888.427.7478 AdvocacyConnector.com Cancer Care Financial Assistance Stivarga® (Regorafenib) CancerCare.org ReachPatientSupport.com or call 1.800.813.4673 or call 1.866.639.2827 Cancer Care Co-Pay Assistance Zaltrap® (Ziv-A ibercept) CancerCareCopay.org Zaltrap.com/Resources or call 1.866.552.6729 or call 1.855.925.8727 HealthWell Foundation Oncotype DX® HealthWellFoundation.org OncotypeDX.com or call 1.800.675.8416 or call 1.866.662.6897 Medicine Assist Tool MedicineAssistTool.org Lonsurf® (trifluridine and tipiracil): TaihoPatientSupport.com Needy Meds NeedyMeds.org or call 1.800.503.6897 Patient Advocate Foundation This is not an all-inclusive list of manufacturing and non-profit organizations offering financial PatientAdvocate.org assistance. There may be organizations in your area or call 1.800.532.5274 who offer assistance. For more information on financial assistance, visit FightCRC.org

• Supportive Care, Practical Issues, & Resources • 3 Gailia Walter CRC advocate 4 SUPPORT FOR CAREGIVERS 2

Caregivers can support their loved one through words and actions.

WAYS TO SUPPORT YOUR End of life can be a ways caregivers can LOVED ONE: challenging and stressful provide support at the • Attend doctor experience for caregivers end of life: appointments and family members. Finding support – • Create a positive and • Manage side effects emotional, spiritual and peaceful atmosphere • Relay health information mental – is extremely • Listen to the feelings, to friends and family important. You may notice needs, thoughts, and • Talk through a variety of feelings and fears that your loved treatment decisions emotions throughout your one wishes to express time as a caregiver, ranging • Help with medication • Relay the news of any from fear, isolation, anger, physical discomfort As a caregiver, it’s easy guilt, and others. Ask to experienced by your to put your loved one’s talk to a social worker loved one to his/her needs before your own, or other mental health medical care team but remember that your professional and engage in role can be physically, activities that help you feel • Use gentle touch emotionally, and spiritually calm and centered. to offer comfort challenging. It’s important • Stay present to the to take good care of “It’s important to talk about needs of your loved one yourself and ensure you thoughts and feelings with get the support you need. others.” - Martin Lannon, For more information, You may consider talking caregiver to wife Trish, a Stage III survivor search Cancer.gov for to a social worker or caregivers mental health professional, During the end-of-life keeping a journal, and phase, the caregiver role Visit Fightcrc.org for more scheduling time each continues. Caregivers can caregiving information, week for you to engage in support their loved one resources, and stories. activities that make you through their words and happy and reduce stress. actions. Here are some

• Supportive Care, Practical Issues, & Resources • 5 ADVANCE DIRECTIVES 4

Advance directives are legal documents that allow you to transcribe your personal wishes and goals for medical treatment at end of life.

ADVANCE DIRECTIVES are of doing so. This may also resuscitation (CPR), legal documents that allow be known as durable power mechanical ventilation, you to transcribe your of attorney for healthcare, artificial nutrition, and personal wishes and goals healthcare agent, hydration, or hydration for medical treatment at or healthcare proxy. (dialysis). end of life. This includes choosing people who can POWER OF ATTORNEY DNR OR DO-NOT- make decisions for you gives an individual the right RESUSCITATE orders must if you’re unable, so your to act on behalf of another be written by a physician, wishes are carried out. person in financial or real although they can be estate issues. written at the request of a Advance directives may patient or family member. vary from state to state. A LIVING WILL holds A person with a valid DNR They are not just for people information about how will not be given CPR if with cancer or people who a person wants to be their heart or breathing are dying. Many people treated medically if they stops. DNR orders can be have them in place so that cannot speak for themself. written for patients who their personal decisions Living wills are also called are being cared for at a can be carried out in directive to physicians, hospital or at home. medical emergencies. healthcare declaration, or medical directive. Legal requirements for MEDICAL POWER They tell families and completing and changing OF ATTORNEY allows healthcare staff what advance directives vary another individual to make kind of life-sustaining according to state law. decisions for someone who care you wish to have, Your state also defines is not physically capable such as cardiopulmonary who can witness them

6 • Your Guide In The Fight • Part 3 • Julienne Gede Edwards Stage IV fighter 7 4 ADVANCE DIRECTIVES · continued

and whether or not they need to be If you or your loved one has a DNR notarized. Living wills and medical power signed by a physician, put it where the of attorney (or healthcare proxy) cannot emergency medical personnel can see it, go into effect until a doctor certifies that or where those caring for you can find it you are unable to make your own medical quickly and easily. decisions. If your condition improves, your healthcare proxy can no longer speak for you. Emergency medical technicians cannot honor living wills or healthcare agents. By law, if they are called, they must stabilize an individual and transport him/her to a healthcare facility.

8 • Your Guide In The Fight • Part 3 • TUMOR BANKING 5

Tissue banking is the storing of human tissue that was removed during a medical procedure, for example, a biopsy, for scientists and researchers to use to advance science.

MANY PEOPLE CONSIDER TISSUE the intent of the use of tissue donated, donations, or tumor banking, throughout and other specifics about the process. treatment and at the end of life. With You also have options for how much, proper written consent, the tissue is sent or how little, personal and medical and stored at a tissue bank, where it is information you want to share. An preserved. Donations could include parts institutional review board (IRB) will likely of tumors, cancer cells, bodily fluids, be involved in this process. Even after you and the whole body. have signed a consent form, you have the option to change your mind and decline. Patients often ask if their donation will directly benefit them. While colorectal In making the decision to donate cancer (CRC) research is moving more tissue, it’s always a good idea to talk swiftly than ever, it is unlikely that you will with your care team and your friends benefit directly. More likely, your donation and family first. will help advance research and education for others who are diagnosed with CRC For additional information about in the future. tissue banking, visit National Cancer Institute (NCI): Cancer.gov If you choose to donate, you will sign a consent form detailing how the tissue bank will prioritize confidentiality laws that protect your medical information,

• Supportive Care, Practical Issues, & Resources • 9 HOSPICE CARE 6

Hospice professionals focus on providing the best quality of life to an individual at the end of their life.

THE PHILOSOPHY of beyond six months. If symptoms, and help hospice care is to provide you are on hospice care, others who are providing assistance and support for you may choose to return care. Hospice nurses are people in the final phases to a different form of available 24 hours a day, of life and to affirm life medical treatment at seven days a week to while allowing death to any time. Depending on manage crises or answer take its course. your needs, hospice care questions. may be provided in the WHEN DO YOU USE HOSPICE? comfort of home or at an • Home health aides inpatient facility. provide practical help Hospice care treats the for patients. For example person, not the disease. Hospice care is provided by help with getting in and It manages symptoms, an interdisciplinary team that out of the bath, getting so a person’s last days includes the following: dressed, and and meal may be spent with dignity preparation. and comfort. It is often a • A specially trained • A social worker who family-centered service hospice physician or coordinates community that includes the patient medical director who may services and financial and the family in making take over your medical needs, and provides decisions. care or work closely with support and emotional your chosen physician counseling for the family Hospice care may be provided if you have a • A nurse who makes • A chaplain who helps limited life expectancy, regular visits to assess with spiritual needs and usually no more than six your condition, provide communicates with months, although for pain relief, help manage family clergy or church some, care may extend other uncomfortable support

10 • Your Guide In The Fight • Part 3 • Hospice doctors, nurses, social workers, For information on Medicare and psychologists and clergy are trained to Hospice Benefits, visit: Medicare.gov help with family dynamics. They put the needs and desires of the patient first. For additional information, see Cancer.gov PAYING FOR HOSPICE. Hospice care is provided through the Medicare Hospice Benefit or private insurance. Hospice helps arrange payment for patients who are not eligible for Medicare and are uninsured.

HOW DOES HOSPICE BEGIN? You will need a referral for hospice, but you don’t need to wait for your doctor to contact a hospice program to find out what is available. Hospice staff can work with your medical team to receive a referral, or you can make a request to your doctor’s office to receive a referral when you are ready.

• Supportive Care, Practical Issues, & Resources • 11 END OF LIFE ISSUES 7

There may come a time when you run out of treatment options, or reach a point where you no longer want to continue treatment.

AT THAT POINT, making decisions facing late-stage or end-of-life issues. about how you want to live the rest of It is not an admission of weakness, loss your life is important, for you and your of hope, or lack of faith in your ability to loved ones. Thinking about the end of fight cancer. It’s planning. You’re fighting life can be difficult, uncomfortable, and for your best quality of life – to complete frightening. You may feel that planning your journey on your terms. for the end of life is “giving up” and that you should focus only on getting well – It’s important to find your own way to but it is important to do what’s right for manage end-of-life issues, as you have you. Even if your family and loved ones to think things through ahead of time. aren’t comfortable talking about it, it is Getting your affairs in order can give you important to address end-of-life issues. a sense of relief and free up energy.

Planning can be empowering and should Hospitals require clear directions about not be viewed as “giving up,” rather, your personal wishes and who can make “taking action.” There are resources, decisions for you, should you be unable experts, and people to help you if you’re to make decisions for yourself.

12 • Your Guide In The Fight • Part 3 • Planning Planning for what you want during treatment and at the end of life requires a team. You’ll want to include: is important • Family members and friends. Talking over your thoughts and wishes can help clarify your own ideas and let to you and your your loved ones know what you need and want. At least one trusted family member or friend needs to know where you keep legal, financial, and loved ones. medical directive information. • Your health care team, especially the doctor who coordinates your various specialty caregivers. • An attorney. You may need help with your will, advance directive, or other legal documents. • A financial planner, if applicable. • Social workers. They can talk with both you and your family about your fears, concerns, and needs. • Hospice staff. You can talk to hospice about their services and requirements before being enrolled. If you have several hospice organizations in your community, see which best fits your needs. • Insurance professionals. They can clarify what coverage you have for care and help with paperwork that may be needed at the end of life. • Spiritual support. Some cancer patients are strengthened by planning a funeral or burial place. Once done, they are free to continue with cancer care (pastoral care is included in hospice services).

• Supportive Care, Practical Issues, & Resources • 13 APPENDIX I

GLOSSARY

abdominoperineal resection: the surgical anus: the opening of the rectum positioned removal of the anus, rectum and in the fold between the buttocks. At the sigmoid colon, resulting in the need end of the digestive tract where waste for a permanent colostomy. is expelled. acupuncture: Traditional Chinese Medicine asymptomatic: no symptoms; no clear (TCM) that involves the insertion of small evidence that disease is present. needles into specific points on the skin. Used to alleviate pain and to treat various benign tumor: noncancerous tumor that physical, mental, and emotional conditions. does not invade nearby tissue or spread to other parts of the body the way acute: abrupt onset that usually is severe; cancer can. happens for a short period of time. biological therapy: a type of treatment made adenoma: non-cancerous polyp. of substances from living organisms to Considered the first step toward colon treat disease. These substances may occur and rectal cancer. naturally in the body or may be made in a laboratory. Types of biological therapy adjuvant therapy: treatment used after include immunotherapy (such as vaccines, primary treatment (such as surgery or cytokines, and some antibodies), gene radiation), generally done to reduce the therapy, and some targeted therapies. risk of the cancer returning. biomarkers: a biological molecule found advance directive: a legal document in blood, other body fluids, or tissues. stating the treatment or care a person Biomarkers appear in tumors, too. Testing wishes to receive, or not receive, your tumor for biomarkers (AKA knowing if he/she becomes unable to make your tumor type) can help you understand medical decisions. if there are abnormal functions of your adverse effect: a negative or body’s organs and systems. Biomarkers harmful effect. can come in the form of genetic mutations (genes), proteins, and DNA abnormalities. antigens: substances that provoke an immune response in the body. The body produces antibodies to fight antigens, or harmful substances, to try to eliminate them.

14 • Your Guide In The Fight • Part 3 • biopsy: the removal of cells or tissues colorectal Cancer (CRC): the term referring for examination by a pathologist. The to rectal cancer (cancer located in the pathologist may study the tissue under a rectum) and colon cancer (cancer located microscope or perform other tests on the in the rest of the colon). cells or tissue. The most common types include (1) incisional biopsy, in which a colostomy: surgical operation where a piece sample of tissue is removed; (2) excisional of the colon is diverted to an artificial biopsy, in which an entire lump or opening in the abdominal wall. suspicious area is removed; and (3) needle complementary and alternative medicine (CAM): biopsy, in which a sample of tissue or fluid treatment used in addition is removed with a needle. to (complementary) or instead of cancer: term for diseases in which (alternative) standard treatments. abnormal cells divide without control CAM may include dietary supplements, and can invade nearby tissues. vitamins, herbs, teas, acupuncture, massage therapy, or spiritual healing. cancer survivor: anyone who has been diagnosed with cancer – from the time distress screening: a screening tool of diagnosis and for the balance of his to identify stressors to be addressed or her life. throughout treatment. Can work like a pain scale to learn about problems and carcinoma in situ: a group of abnormal cells concerns such as housing, insurance and that remain in the place where they first transportation, in addition to psychosocial formed. Also called stage 0 disease. and emotional challenges. chemotherapy: treatment that uses drugs DPD deficiency: A metabolic disorder in to stop the growth of cancer cells, either which there is a low level of the enzyme by killing the cells or by stopping them dihydropyrimidine dehydrogenase (DPD). from dividing. Chemotherapy may be DPD is an enzyme needed to helps the given by mouth, injection, or infusion, body break down 5-FU and capecitabine. or on the skin, depending on the type and stage of the cancer being treated. endoscopy: an examination using a lighted, flexible instrument that allows a physician clinical trial: research study that tests to see the inside the digestive tract. The safety and effectiveness of new medical endoscope can be passed through the approaches and treatments. mouth or through the anus. colectomy: surgical procedure to remove explanation of benefits (EOB): summary all or part of the patient’s colon. A partial of medical treatment costs or healthcare colectomy is when only part of the colon service that an insurance company may is removed. An open colectomy is when send to a patient following the service. one long incision is made in the wall of the abdomen and doctors can see the colon directly. A laparoscopic-assisted colectomy is when several small incisions are made and a thin, lighted tube attached to a video camera is inserted through one opening to guide the surgery.

• Supportive Care, Practical Issues, & Resources • 15

AR GL?@@ Y · continued

familial adenomatous polyposis (FAP): a integrative medicine: A patient approach syndrome where a gene mutation to medicine that involves both standard influences the development of colorectal treatment and complimentary therapies cancer. People with FAP usually develop like massage and acupuncture. hundreds, and sometimes thousands, of pre-cancerous polyps, or growths interdisciplinary team: A coordinated group at a young age. of healthcare professionals from diverse fields who work together toward a family history: a record of a person’s common goal for the patient. Also called relatives along with the relative’s medical multidisciplinary team. history to include current and past illnesses. A family history may show a late effects: Health problems that occur pattern of certain diseases in a family. months or years after a disease is diagnosed or after treatment has ended. fecal diversion: a surgical opening of part of the colon (colostomy) or small intestine localized: Localized cancer is usually found (ileostomy) to the surface of the skin that only in the tissue or organ where it began, provides a passageway for stool to exit and has not spread to nearby lymph nodes the body. or to other parts of the body. FIT: the fecal immunochemical test (FIT) is low residue diet: a low-fiber diet that a screening test for colorectal cancer that includes restrictions on foods that tests for blood in the stool (originating increase bowel activity (like dairy and from the lower intestines), an early sign prune juice). Fruit and vegetable intake of cancer. is reduced to limited amounts of well- cooked vegetables and cooked or very ripe follow up: follow-up care involves fruits. Whole-grain breads and cereals are regular medical checkups, which may replaced with refined products. Legumes, include a physical exam, blood tests seeds and nuts are omitted entirely. and imaging tests. Lynch syndrome: an inherited disorder genetics: the study of heredity and how in which affected individuals have a the characteristics of living things are higher-than-normal chance of developing transmitted from one generation colorectal cancer and certain other types to the next. of cancer, often before the age of 50 (also called hereditary nonpolyposis genomics: the branch of molecular colorectal cancer). biology concerned with the structure, function, evolution, and mapping metastasis: the spread of cancer cells of genomes. from the place where they first formed to another part of the body. In metastasis, immunotherapy: a treatment that uses cancer cells break away from the original certain parts of a person’s immune system (primary) tumor, travel through the blood to fight diseases such as cancer, either or lymph system, and form a new tumor by stimulating the person’s own immune in other organs or tissues of the body. system to work harder or smarter to The new, metastatic tumor is the same attack cancer cells, or by giving the person type of cancer as the primary tumor. immune system components, such as man-made immune system proteins.

16 • Your Guide In The Fight • Part 3 • mortality: the number of deaths occurring polyp: a growth on the inner surface in a given period in a specified population. of the colon, some of which can progress It can be expressed as an absolute number into cancer; may be scattered throughout of deaths per year, or as a number per the colon and vary in size from a few 100,000 persons per year. millimeters to several centimeters; flat or raised appearance. multidisciplinary team: A group of different healthcare professionals who are members prognosis: the likely outcome or course of different disciplines with their own of a disease; the chance of recovery specialized skills and expertise. or recurrence. NCI-designated cancer center: psychosocial: the psychological, emotional, cancer research institutions in the US and social parts of a disease and its supported by National Cancer Institute. treatment; can include feelings, moods, These institutions form the backbone beliefs, the way people cope, and of NCI’s programs for studying and relationships with others. controlling cancer. recurrence: return of cancer after treatment neoadjuvant therapy: treatment given and after a period of time during which as a first step to shrink a tumor before the cancer cannot be detected; the same main treatment, which is usually surgery, cancer may return where it started is given. or somewhere else in the body. oncologist: doctor with special training in small intestine: the portion of the diagnosing and treating cancer. Some digestive tract that first gets food oncologists specialize in a particular type from the stomach. It’s divided into the of cancer treatment. duodenum, the jejunum, and the ileum. oncology: branch of medicine that stoma: A surgically-created opening from specializes in the diagnosis and treatment an area inside the body to the outside. of cancer. It includes medical oncology treatment adherence: following treatment (the use of chemotherapy, hormone regimens; a patient’s willingness to therapy, and other drugs), radiation start treatment and the ability to take oncology (the use of radiation therapy), medications exactly as prescribed. and surgical oncology (the use of surgery and other procedures). tumor: nonspecific term that simply refers to a mass; can refer to benign pathologist: doctor with training in or malignant growths. identifying diseases by studying cells and tissues under a microscope. primary care: primary care includes physical exams, treatment of common medical conditions, and preventive care, such as immunizations and screenings. A primary care doctor is usually the first healthcare professional a patient sees for medical care.

• Supportive Care, Practical Issues, & Resources • 17 APPENDIX II

RESOURCES

Fight Colorectal Cancer Advocates Facebook Group Fight Colorectal Cancer (Fight CRC) is a This Facebook group is where advocates can nonprofit organization and the leading connect with other survivors and caregivers national colorectal cancer advocacy group. in the fight against colorectal cancer. Focused We FIGHT to cure colorectal cancer and primarily on policy change, this group is serve as relentless champions of hope for all perfect for those looking to get more involved affected by this disease through informed with political advocacy at Fight CRC. patient support, impactful policy change, www.facebook.com/groups/AdvocatesFightCRC and breakthrough research endeavors. Additionally, we lead efforts to increase AliveAndKickn and improve colorectal cancer research An organization dedicated to improving the for all stages and throughout the cancer lives of individuals and families affected by continuum from prevention, early detection Lynch Syndrome and associated cancers and diagnosis, therapeutic intervention, post through research, education, and screening. treatment follow-up, and survivorship. www.aliveandkickn.org www.FightColorectalCancer.org American Society of Colon and Rectal Surgeons www.fascrs.org Fight Colorectal Cancer’s Clinical Trials Info Fight CRC Trial Finder: A Curated List Powered American Society of Clinical Oncology by Patients. This trial finder is a one-stop www.cancer.net place to find and learn more about high- Camp Kesem impact clinical trials for CRC patients. The An organization offering recreational summer Late Stage MSS-CRC Trial Finder is a place camp for children whose parent(s) have been you can search for clinical trials that are diagnosed with cancer. open in your geography, and for which you may be eligible. The current data are limited www.CampKesem.org to MSS (microsatellite-stable) and stage IV CancerCare CRC patients. The list of trials curated here is www.CancerCare.org sourced from the ClinicalTrials.gov website. www.FightCRC.org/ClinicalTrials Cancer Support Community www.CancerSupportCommunity.org

Caring Bridge www.CaringBridge.org

18 • Your Guide In The Fight • Part 3 • Colorectal Cancer Alliance Health Information Colorectal Cancer Alliance’s mission is to www.MedlinePlus.gov empower a nation of allies who work with us to provide support for patients and families, Healthy Living, Personalized Health Advice caregivers, and survivors; to raise awareness www.HealthFinder.gov of preventative measures; and inspire efforts Helping Hands to fund critical research. www.rci.LotsaHelpingHands.com www.CCAlliance.org Imerman Angels Colon Cancer Challenge Providing personalized connections that a 501(c)3 non-profit organization dedicated enable one-on-one support among cancer to a World Without Colorectal Cancer fighters, survivors and caregivers. through awareness, prevention, screening, www.ImermanAngels.org and research. www.ColonCancerChallenge.org Inspire Inspire is a safe, privacy-protected place Colon Cancer Coalition/GYRIG where you can connect with people who share Non-profit organization dedicated to your health concerns, obtain support, and find encouraging screening and raising awareness information about colorectal cancer. of colorectal cancer. Their signature Get FightCRC.org/Inspire Your Rear in Gear® and Tour de Tush® event series are volunteer-driven in communities LIVESTRONG throughout the United States. www.LiveStrong.org www.ColonCancerCoalition.org Michael’s Mission Colon Club Michael’s Mission is focused on improving the The Colon Club connects young adults quality of life and treatment options diagnosed with colorectal cancer so they for those suffering from colorectal never have to feel alone. Our mission is to cancer through education, research talk “poo” to as many people as possible, and patient support. specifically young adults, educating www.MichaelsMission.org about the risk factors, genetic precursors, and symptoms of CRC and to demand a My Lifeline COLONOSCOPY when it is appropriate www.MyLifeLine.org for THEM! My Pearl Point Colontown Help with nutrition guidance and tips for A Paltown, Peer-Curated Community: This is managing side effects. Free advice and a group of online communities on Facebook support for living with and beyond cancer. dedicated to colorectal cancer. (877) 467-1936 X 101 www.Colontown.org www.pearlpoint.org

Colorectal CareLine www.ColorectalCareLine.org

Comprehensive Cancer Centers CancerCenters.cancer.gov

• Supportive Care, Practical Issues, & Resources • 19

H IBJ D E BDE · continued

National Comprehensive Cancer Network American Association of Retired Persons (AARP) Colon and Rectal Patient’s Guide: Patient Find detailed information on Medicare and other resources published by the National health insurance programs for people over 50. Comprehensive Cancer Network® (NCCN®) 888-OUR-AARP (888-687-2277) that detail the best treatment options. They www.aarp.org/health also include patient-friendly tools, such as questions to ask your doctor, a glossary of American Cancer Society - Taking Charge terms, medical illustrations of anatomy, and of Money Matters Workshop more https://www.nccn.org/patients/guidelines/ Offers a series of booklets on financial topics cancers.aspx for people living with cancer. www.nccn.org 800-ACS-2345 (800-227-2345) www.cancer.org National Cancer Institute www.cancer.gov Department of Health and Human Services Learn about the Affordable Care Act (health Peer-Reviewed, Evidence-Based Medicine care reform). www.UpToDate.com www.healthcare.gov

Scientific Journal Articles Healthcare Blue Book www.ncbi.nlm.nih.gov/pubmed Provides healthcare consumers with information on cost of medical services based Store My Tumor on where you live. Specializes in collecting, processing, and www.HealthcareBlueBook.com storing viable tumor for all types of cancers. www.storemytumor.com Medicare Stupid Cancer (U.S. Department of Health and Human Services) www.StupidCancer.org Find information on the Medicare health insurance program, including prescription The National Institutes of Health Clinical Trials drug plans. www.ClinicalTrials.gov www.medicare.gov

United Ostomy Associations of America (UOAA) Medicaid 800-826-0826 Find your state’s Medicaid toll-free hotline. www.ostomy.org www.medicaid.gov

National Association of Insurance Commissioners GENERAL INFORMATION ON FINANCIAL Find your state’s insurance commissioner. ISSUES AND INSURANCE www.naic.org

Agency for Healthcare Research and Quality (U.S. National Cancer Legal Services Network (NCLSN) Department of Health and Human Services) Find a directory of organizations that provide Provides information on choosing a health plan. free legal help for people and families affected www.ahc.gov/consumer by cancer. www.nclsn.org America’s Health Insurance Plans National directory of health insurance plans and information on types of coverage. www.ahip.org

20 • Your Guide In The Fight • Part 3 • National Coalition for Cancer Survivorship Partnership for Prescription Assistance (PPA) Publishes the booklets “Working It Out: Your Offers low-cost and free prescription drug Employment Rights as a Cancer Survivor” and programs for those with limited income “What Cancer Survivors Need to Know About 888-4PPA-NOW (888-477-2669) Health Insurance.” www.pparx.org 877-NCCS-YES (877-622-7937) www.CancerAdvocacy.org Social Security Administration Find your local social security office. Patient Advocate Foundation www.ssa.gov Offers legal and advocacy help when disputing insurance claim denials and provides financial assistance information. TRANSPORTATION ASSISTANCE 800-532-5274 LOCAL TRANSPORTATION www.PatientAdvocate.org

Patient Advocate Foundation – American Cancer Society – Road to Recovery National Underinsured Resource Directory Provides local transportation to and from Offers an online tool and a smartphone app cancer treatments. to help find local, state and national resources 800-ACS-2345 (800-227-2345) for people who are underinsured and looking www.cancer.org for insurance coverage options or other types Patient Advocate Foundation – of financial assistance. Financial Aid Fund 800-532-5274 Provides financial assistance for www.PatientAdvocate.org/help4u.php transportation to and from treatment. NeedyMeds.com 800-532-5274 Provides information on how www.PatientAdvocate.org to find pharmaceutical manufacturer assistance programs. LONG-DISTANCE TRANSPORTATION www.NeedyMeds.com

Patient Access Network (PAN) Foundation Air Charity Network Focused on ensuring underinsured patients Offers air travel to treatment centers living with life-threatening, chronic and rare for cancer patients and their caregivers. diseases get the financial assistance they 877-621-7177 need so they can start focusing on what www.AirCharityNetwork.org matters most: their health. Corporate Angel Network 1-866-316-7263 Uses empty seats on corporate aircraft to help www.PanFoundation.org cancer patients reach treatment centers. Patient Advocate Foundation – 914-328-1313 Co-Pay Relief Program www.CorpAngelNetwork.org Provides financial assistance for prescription Lifeline Pilots drug co-payments to patients who qualify. Offers air travel to treatment centers 866-512-3861 for cancer patients and their caregivers. www.copays.org 800-822-7972 www.LifelinePilots.org

• Supportive Care, Practical Issues, & Resources • 21 RESOURCES · continued

Mercy Medical Airlift CLINICAL TRIAL COSTS Legacy Offers air travel to treatment Legacy provides men centers for cancer patients National Cancer Institute – with a convenient and and their caregivers. Insurance Coverage affordable at-home solution 888-675-1405 and Clinical Trials to preserve their fertility www.MercyMedical.org Find information on insurance before undergoing potentially coverage of clinical trial costs. harmful cancer treatment. National Patient Travel Center http://www.cancer.gov/ www.GiveLegacy.com Offers air travel to treatment clinicaltrials/learningabout/ centers for cancer patients payingfor/insurance-coverage Samfund and their caregivers. Through direct financial 800-296-1217 assistance and free online www.PatientTravel.org YOUNG ADULT support and education, help young adults survive and Raquel’s Wings for Life Allyson Whitney Foundation, Inc. move forward with their Offers air travel to treatment Assisting young adults with rare lives after cancer. centers for cancer patients cancers with “Life Interrupted” www.TheSamfund.org and their caregivers. Grants™. Allowing them to 940-627-1050 focus on healing rather than Sy’s Fund www.RaquelsWingsForLife.com financial concerns. Provides funding for www.AllysonWhitney.org meaningful gifts and LODGING ASSISTANCE integrative therapies for Brenda Mehling Cancer Fund young adults ages 18 through Supporting patients 18-40 American Cancer Society – 39 with cancer or ongoing currently undergoing cancer medical issues related to Hope Lodge treatment by covering services Provides lodging for families cancer or cancer treatment. to meet daily needs, such as www.SysFund.org during cancer treatment. co-payments, health expenses, 800-ACS-2345 rent, insurance, and more. Thrive Cancer Fertility Network (800-227-2345) www.bmcf.net Provides financial aid to www.cancer.org individuals 18-40 whose Cancer For College fertility may be compromised AirBNB Provides hope and inspiration Through a collaboration and connect those affected by awarding college by a cancer diagnosis with with the Cancer Support scholarships to cancer Community, the Airbnb community support. patients and cancer survivors www.CaporalAssistance.org community will provide free attending an accredited housing for cancer patients school or university in the US Ulman Cancer Fund and caregivers, provided they during the award period. High For Young Adults meet certain geographic and school seniors and current Supporting, educating and income criteria. college students eligible to connecting young adults 877-793-0498 apply. Applications accepted affected by cancer through www.CancerSupportCommunity. October 1 through January 31. online resources, college org/AirBNB www.CancerForCollege.org scholarships, advocacy, and awareness. www.UlmanFund.org

22 • Your Guide In The Fight • Part 3 • 23 MEDICAL ADVISORY BOARD REVIEWERS All medically-reviewed content in Your Guide in the Fight was written and edited by Fight Colorectal Cancer.

Dennis J. Ahnen, M.D. Richard M. Goldberg, M.D. University of Colorado Ohio State University Medical Center Hereditary Cancer Clinic Jean S. Kutner, M.D., MSPH Al B. Benson III, M.D., FACP University of Colorado Hospital Northwestern University Edith Mitchell, M.D., FACP Dustin Deming, M.D. Thomas Jefferson University University of Wisconsin Carbone Cancer Center

View all Medical Advisory Board members at: FightCRC.org/MAB

ADDITIONAL REVIEWERS

Wells Messersmith, M.D. Jessica Martin, Ph.D. Professor and Co-Division Head, Division of Fight Colorectal Cancer Medical Oncology University of Colorado Research Advocate Christopher Lieu, M.D. Stage IV Fighter Assistant Professor, Director Colorectal Medical Oncology University of Colorado

YOUR GUIDE IN THE FIGHT DEVELOPMENT TEAM

Will Bryan Sam Monica Will Bryan Design Brand Manager Anjee Davis, MPPA Nancy Roach President Founder Andrea (Andi) Dwyer Erica Weiss, MPH, MSUP The Colorado School of Public Health Plain Language Health Writer University of Colorado Cancer Center Sharyn Worrall, MPH Elizabeth Fisher, MBA Senior Manager of Education & Research Project Manager Nancy Levesque Director of Communications

PHOTO CREDITS: Brett Flashnick, Ryan Hollis, Travis Howard, Brian Threlkeld

24 • Your Guide In The Fight • Part 3 • ADDITIONAL RESOURCES

PATIENT WEBINARS PODCASTS Fight CRC hosts free patient Fight CRC’s educational podcasts webinars featuring leading put a stop to “taboo-ty” topics experts from across and discuss real issues impacting the country. colorectal cancer patients.

View all resources at: FightCRC.org/Resources

AL TRIALS AL TRIALS

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Your Guide to Colorectal Cancer Screening Cancer Colorectal Guide to Your SKIN TOXICITY the Skin of Managing Side Effects for Tips BIOSIMILARS Drug Types: Between the Differences Down Breaking Drugs Generic, and Brand-Name Biologic, Biosimilar, and More Know to Want You All the Things GENETICS and Genetic Testing Cancer Colorectal Hereditary Understanding SIDE EFFECTS Treatment Cancer During Colorectal Managing Side Effects K L

Screening Skin Toxicity Biosimilars Clinical Trials Genetics Side Effects

Download or order copies at: FightCRC.org/Resources

MADE POSSIBLE

Your Guide in the Fight was made possible thanks to the support of the following organizations: VER 4

134 Park Central Square, Suite 210 • Springfield, MO 65806 ©2019 Fight Colorectal Cancer. All rights reserved. All rights Cancer. Colorectal Fight ©2019