Breast Cancer Guide
A Journey Through Your Care If you have just been told that you have breast cancer, you are likely feeling overwhelmed with emotions, information, and decisions. Mount Carmel’s team of expert physicians and Breast Oncology Nurse Navigators are here for you from your diagnosis and treatment through your recovery and survivorship.
Our Breast Cancer Guide contains information to help you better understand the different aspects of your care and the resources that are available to you through your journey in the coming weeks and months.
Although you may not be a healthcare professional, you are an important part of your healthcare. As you go through your diagnosis and treatment, keep these suggestions in mind:
Don’t be afraid to ask questions. Keep a written list of your questions to take with you to your doctor’s appointments.
Bring someone with you to your appointments to help you listen, ask questions, and take notes. It is hard to absorb everything by yourself.
Keep a log of your healthcare journey as you go along.
Feel free to get a second opinion about what treatment options are best for you.
Express your feelings — talk with friends and family members and seek support.
For your continued health education, this booklet and others are available on mountcarmelhealth.com.
1 Table of Contents
This Breast Cancer Guide is dedicated with love Breast Cancer...... 4 Survivorship — What Is Breast Cancer?...... 4 New Beginnings...... 35 to the many women diagnosed with breast cancer. Types of Breast Cancer...... 5 Your Survivorship...... 35 Our hope is that by sharing the knowledge Understanding Your Pathology Report...... 6 Fertility After Cancer Treatment...... 37 Your Healthcare Team...... 9 Menopause...... 38 we have gained over the years from working Sexuality...... 40 Surgery...... 10 Finances...... 42 with women with breast cancer, we may ease the Types of Surgery...... 10 Helping Your Children Cope...... 43 way for all those to come. Your Surgical Experience...... 13 Follow-up Care...... 15 Support Resources ...... 45 Breast Reconstruction...... 18 National Organizations...... 45 THE MOUNT CARMEL BREAST ONCOLOGY NURSE NAVIGATORS Breast Prostheses...... 21 Websites...... 45 Books...... 47 Treatments...... 22 Radiation Therapy...... 22 Glossary...... 48 Oncotype Dx Test...... 23 Chemotherapy...... 23 Notes...... 52 Anti-hormone Therapy...... 24 Clinical Trials...... 25 Family History...... 26
Managing Side Effects...... 27 Fatigue...... 27 Hair Loss...... 27 Lymphedema...... 28 Lymphedema Treatments...... 30 Digestive Side Effects...... 31 Nutrition, Exercise, and Weight Management...... 32 Other Nutrition Issues...... 33
2 3 Types of Breast Cancer Breast Cancer Ribs There are many different types of breast Pectoralis muscle cancer. The two most common types are: Fat Lobules What Is Breast Cancer? “Breast cancer is just a Ductal carcinoma — begins in the ducts of diagnosis. It does not limit me the breast and occurs in about 80% of all Duct Breast cancer begins when cells in the breast breast cancers. undergo certain changes. A normal cell or define me as a person.” Nipple Lobular carcinoma — occurs in 10% to becomes malignant, or cancerous, when it — TISH JOHNSON, Silver Linings 15% of breast cancers and begins in the grows and reproduces itself without normal Duct lobules or milk glands of the breast. control mechanisms. In most cases we do not opening know what causes these changes to occur. If lymph fluid is channeled back into the the abnormal cells are not eliminated, they bloodstream. Other types of breast cancer that are not as can continue to grow and eventually spread to common are: other areas of the body. The lymph nodes may play an important part in your treatment decisions. Lymph nodes Tubular — about 2% of breast cancers. Most breast cancers begin months to years are places where cancer cells may collect. For before they can be detected. Because of this, certain types of breast cancer, removing and Mucinous — about 2% of breast cancers. Ductal breast cancer is not usually a medical or carcinoma in studying some of the lymph nodes (most Inflammatory — about 1% of breast situ (DCIS) surgical emergency. It is often fine for you to often from under the arm near the affected cancers, and usually appears as a red and take the time you need to learn about your breast) helps to determine whether the breast warm area of the breast with “orange peel” breast cancer. Together with your doctors cancer has begun to spread outside of the appearance of the skin. and loved ones, you can make thoughtful breast. decisions about surgery and treatment. There are many different types of breast Breast cancers are either in situ or invasive: cancer. Each breast cancer has various In situ cancers begin within the walls of characteristics that affect how it may behave. the duct or lobule. They are very unlikely After studying the tissue specimens from to spread to other parts of the body any biopsies or surgeries, the pathologist (metastasize). will report the numerous characteristics of Invasive cancers have broken through the the breast cancer. Your surgeon and your walls of the duct or lobule and have the oncologist will look at all the factors about ability to spread to other parts of the body. you and your breast cancer in determining Invasive what treatment to recommend for you. ductal Having a basic knowledge of the lymphatic carcinoma system will help you understand certain aspects of your treatment for, and recovery from, breast cancer. The job of the lymphatic system is to keep the tissue around the cells of the body free from excess fluid, proteins, bacteria, viruses, and destroyed cells. Lymph nodes and lymph vessels act as filtering stations. They remove and destroy bacteria, viruses, and dead cells. The remaining cleaned 4 5 Understanding Your The last section is the microscopic Angiolymphatic HER2/neu Status diagnosis that states: Pathology Report Space Invasion This test is done to note the number of HER2/ • Size of tumor This tells whether your cancer has spread to neu receptors on the surface of the tumor Some women want to know the results of • Type of cancer the blood vessels or lymphatic system around cells. The amount of HER2/neu receptors their surgery on their pathology report. Other present may help your doctor know if your • Grade of cancer your tumor. It is best when no invasion is women prefer not to know the details. The seen. cancer will respond to certain treatments. following will help you to understand what • Angiolymphatic invasion you would like to know about your report. • ER/PR status Margin Status Lymphatic channel The tissue removed at the time of the • HER2/neu status The margins are the edges of the tissue that biopsy or surgery is sent to a pathologist. • Margin status Breast tissue Cancer cells was removed. The report will state if there is A pathologist is a doctor who has had cancer at these edges. The goal is to have a specialized training looking at tissue under • Lymph node status margin of healthy tissue that is free of cancer Blood vessel Normal duct cells a microscope. While you may not meet this • Staging cells removed from around the tumor. If the doctor, he or she plays a key role in your care. Wall of milk duct margins are not free of cancer cells, your At Mount Carmel, when a diagnosis of breast Grade surgeon may want to remove more tissue. cancer is made, two pathologists review the If the tissue is cancerous, it will be graded as tissue to ensure an accurate diagnosis. They A examine the tissue very closely and provide to the amount of change the cancerous cells A – cancer cells have from normal cells. The grade is based on B – normal tissue your doctor with a report of the findings. ER/PR Status B C – the edge The report with the diagnosis, including the a combination of growth pattern and tubule Tumors are tested for whether or not they C grade of the tumor, estrogen receptor status, formation, nuclear changes, and cellular depend on estrogen and progesterone to progesterone receptor status, HER2/neu proliferation (mitotic rate). grow: status, and the status of the lymph nodes, The grading is done using this system: Negative margin Postive margin ER (estrogen receptor) positive — depend is usually available within several days after Grade 1 (well differentiated/low grade): surgery. Because the report has many parts on estrogen to grow. The cells are similar to normal cells. and can be confusing, talk with your doctor to ER negative — do not depend on estrogen be certain that you understand the findings. Grade 2 (moderately differentiated/ to grow. intermediate grade): Each hospital or lab has its own format for The cells show some PR (progesterone receptor) positive — pathology reports, but the basic information amount of change from the normal cells. depend on progesterone to grow. is the same. Mount Carmel pathologists Grade 3 (poorly differentiated/high follow the College of American Pathologists’ PR negative — do not depend on grade): guidelines for reporting your breast cancer. The cells are unlike normal cells. progesterone to grow. The pathology report is divided into sections: If the tumors are positive, a percentage is One section includes the diagnosis before given that shows how positive the tumor is the biopsy (pre-op), the procedure (what for estrogen and/or progesterone. ER and PR was done), and the statement of the type status is very helpful in deciding what type of of tissue that was removed. treatment is needed. Another section describes the size of the tissue removed and what it looks like.
6 7 Status of Lymph Nodes Stage Your Healthcare Team Primary Care Doctor — Primary care doctors are often family practice or internal This part of the report tells how many lymph The stage of your cancer is determined by Doctors medicine physicians. Your primary care nodes were found. Some patients may have a combining: doctor may see you for certain healthcare Many doctors work together in providing single node or several sentinel lymph nodes T — needs during your treatment for breast the size of your tumor. your care. Each has responsibility for different removed. Others may have multiple nodes cancer. removed. When sentinel lymph nodes have N — the number of lymph nodes positive aspects of care. Although it can be hard to breast cancer in them, often more lymph for cancer. decide which doctor you should call, contact Radiologist — The radiologist specializes the doctor who is most involved with your nodes are removed in a procedure called an M — metastasis, which is determined from in interpreting mammograms, X-rays, care for the problem you are having. Be axillary lymph node dissection. Your doctor the results of other tests such as bone, ultrasound readings, scans, and other imaging cannot tell the number of nodes removed at assured that if you do contact the wrong procedures. liver, and brain scans. These tests are doctor, you will be directed to the correct one. the time of an axillary node dissection. It is often performed to help in treatment only after the pathologist looks closely at the decisions or if you have symptoms that Surgeon — The surgeon operates to remove Other Healthcare tissue removed and finds the lymph nodes make your doctor concerned about the cancerous area and continues to monitor Team Members that your doctor will know how many were possible spread of your cancer. your health over time. Breast Oncology Nurse Navigator — removed. All lymph nodes are examined, and Pathologist — The pathologist studies This the report will tell how many were found and and identifies cancerous cell types and nurse works for the hospital and provides how many nodes have cancer in them. These their characteristics in the tissues removed information, education, and support to you are called positive lymph nodes. The presence from your breast. The pathologist provides and your family. She is available through and number of positive lymph nodes are very a report to the surgeon and to the medical all of your treatments and even afterward important factors in determining treatment. and radiation oncologists, which helps them if you desire. She can refer you to support determine what treatment will best meet your groups, classes, and other resources in the needs. community. Medical Oncologist — The medical Registered Nurses — Registered nurses oncologist specializes in the medical are important resources for you as you treatment of cancer, prescribes and manages move through your cancer care. They will your chemotherapy, and often oversees be caring for you in the hospital for your hormone therapy. He or she monitors surgery and during other treatments such as your health over time and checks for the chemotherapy and radiation therapy. development or recurrence of other cancerous Other Team Members — A number of areas. other clinicians will work with you as needs Radiation Oncologist — The radiation arise. These include social workers, discharge oncologist specializes in treating cancer with planners, case managers, dietitians, and radiation. He or she manages the radiation hospital chaplains. You may also be referred therapy treatments you receive and sees you to an occupational, physical, or lymphedema about once a week while you are receiving therapist. radiation therapy. Plastic Surgeon — For women choosing breast reconstruction, this doctor operates to rebuild your breast and may alter your healthy breast so that your breasts look similar.
8 9 of their surgery, or use a breast prosthesis of radiation after breast-conserving surgery, Surgery afterward. Options for breast reconstruction and your surgeon and radiation oncologist include implants (may be performed in two will discuss these types with you. Most women stages, with the first stage often performed by receive whole-breast radiation therapy after Types of Surgery the plastic surgeon at the time of mastectomy) surgery. “Knowledge is power.... When or tissue (flap) reconstruction. After the Lumpectomy/partial mastectomy with A woman has many different options for you understand, you can become removal of the breast, with or without radiation is a treatment that provides the same reconstruction, one or more drains are placed treatment of her breast cancer: mastectomy an active participant, choosing survival benefit as a mastectomy. without reconstruction, skin-sparing in the surgical area, and a woman may stay mastectomy with reconstruction, nipple- treatment because it is in your overnight in the hospital. A partial mastectomy or lumpectomy may not sparing mastectomy, lumpectomy (also best interest. Having made the be a good choice for a woman who: known as partial mastectomy or breast- choice, you will feel much more Partial Mastectomy Is pregnant and therefore should not conserving surgery) followed by breast in control, and much less like a or Lumpectomy expose the unborn child to the effects of radiation, and oncoplastic surgery. A sentinel radiation. victim.” lymph node biopsy, or less commonly an Has two or more areas of cancer that are axillary lymph node dissection, may also be — RONNIE KAY, Spinning Straw into Gold not close together in the same breast. performed as a part of surgery for invasive breast cancers. Your surgeon will help you Has a pacemaker or defibrillator on the decide which treatment option may be the performed with a sentinel lymph node same side of her cancer. best choice for you. biopsy or an axillary lymph node dissection. Has already had whole-breast radiation Mastectomies may also be performed therapy to the same breast. prophylactically (removal of a normal breast Mastectomy Has a tumor that is located near the nipple to decrease risk) in patients with a strong or chest wall. (Simple Mastectomy, personal or family history of breast cancer. Is unable or unwilling to have radiation Skin-Sparing Mastectomy) A skin-sparing mastectomy leaves much therapy. of the breast skin, which allows the reconstructed breast to look more natural. In Has a large tumor in a relatively small some cases, a nipple-sparing mastectomy can breast. be performed, in which all the breast tissue However, a patient with a large tumor may is removed, but the nipple-areolar portion Partial mastectomy, also known as receive chemotherapy before surgery (called is left intact. This is not possible in all breast lumpectomy or breast-conserving surgery, neoadjuvant therapy) in an attempt to shrink cancers. The size and location of the cancer involves removal of the cancerous area of the cancer down, which can make her a within the breast may eliminate this as an the breast with a border or margin of normal better candidate for a lumpectomy. If this is option. breast tissue surrounding the cancer. an option for you, your surgeon and medical A modified radical mastectomy includes A breast wire or tag localizer may be done oncologist will discuss this with you. removal of the entire breast, nipple-areola before a lumpectomy or partial mastectomy. complex, and axillary lymph nodes. An axillary lymph node dissection is usually A sentinel lymph node biopsy or an axillary needed if your lymph nodes contain cancer. lymph node dissection may be performed at the time of the lumpectomy. The mastectomy incision leaves a horizontal, During a simple or skin-sparing mastectomy, slightly curved line across the side of the chest In most patients, the lumpectomy or partial all of the breast tissue and nipple-areola where the breast was removed. Women may mastectomy is followed by radiation therapy complex are removed. This surgery is typically choose to have breast reconstruction as part to the affected breast. There are several types 10 11 Localization Procedure surgeon will discuss whether you need a only sentinel nodes are removed, it will last You will need to bring a list of your Before Breast Surgery sentinel lymph node biopsy. only days or weeks. When this occurs after medications. If you are taking a blood The sentinel nodes are the first lymph nodes an axillary node dissection, it may be more thinner, you may need to stop taking it a few Your surgeon may order the placement of a in the chain of nodes draining the breast. If noticeable and may last longer. Although the days before surgery. breast localization device before your surgery. the breast cancer has moved from the breast degree of numbness will decrease over time, If you have a history of heart problems, the The localization device marks the clip that to the axilla (underarm area), it will be seen some slight numbness may be permanent. surgeon will need to have your cardiologist was placed at the time of your biopsy. The in the sentinel lymph nodes. A patient has For some women, it is known before surgery okay you for surgery (called “clearance”). clip marks the cancer area to be removed. anywhere from 1 to 4 sentinel lymph nodes, that cancer is in the lymph nodes. In these Most women with early-stage breast cancer The localization device guides your surgeon and for each patient, it is a different number. cases, a sentinel node biopsy may not be do not need bone scans, CT scans, or PET during surgery to the exact tissue that needs During surgery, these nodes are identified and needed. Instead, the patient may undergo an scans, just baseline blood work, which will be removed. removed and are inspected by a pathologist to axillary node dissection. ordered before surgery. Either a wire or a tag can be used to localize a see if they contain cancer cells. Your Breast Oncology Nurse Navigator positive biopsy clip. Your physician will order In order for the surgeon to locate the sentinel will contact you to schedule your My Plan the one best for your situation. nodes, a radioactive substance is injected into Your Surgical Experience appointment before your surgery. At this the breast, near the nipple, before surgery. appointment you will receive information Sentinel Lymph Node Biopsy This may cause stinging, which will ease. If you have a lumpectomy and a sentinel that supports your doctor’s plan of care and Axillary Node Dissection Many doctors also inject a blue dye into the node biopsy, you will likely go home the day and information about survivorship breast during the surgery, which also aids in of your surgery. If you have a mastectomy programming. You will also have a surgical detecting the nodes. During the surgery, the and/or an axillary node dissection, you bra fitting. Your navigator can connect you to surgeon finds the sentinel nodes using an may spend the night in the hospital. Breast other resources that may be helpful to you. reconstruction surgery also requires at least instrument that is like a Geiger counter, and The pre-operative nurses will call you the day also looks for blue discoloration of the nodes. an overnight hospital stay. If you have a drain in place after surgery, the nurses will instruct before your surgery to tell you what time to be Sometimes women who have had the blue dye you and your family how to care for the drain at the hospital and what medications you may injected into their breast find that their urine before you go home. It is not difficult. Also, take before your surgery. is bluish-green for a short time after surgery you will be asked to wear your surgical bra You will also be reminded to: or that their skin may be somewhat blue. as much as possible after surgery, to decrease Not eat or drink anything after midnight swelling at the breast and underarm sites. It For staging purposes of your breast cancer, it the night before your surgery. is critically important to see if there are cancer is best to be fitted for your surgical bra in the cells in the lymph nodes and, if so, how many days before your surgery so you know it will Wear comfortable clothing that is easy to lymph nodes are involved. be comfortable. Some surgeons allow patients change. to shower with the drain in place and some If the sentinel nodes do not contain cancer Remove your jewelry and any piercings do not. Be sure to ask your surgeon if you are cells, the surgeon does not need to remove before coming to the hospital. allowed to do so. any more lymph nodes. If the sentinel nodes Not bring any valuables. do contain cancer cells, the surgeon may For most women with early-stage breast Have someone drive you to and from the remove more lymph nodes. Before Surgery cancer, the cancer has not moved from the hospital. breast. For stage 0 cancer (DCIS – ductal This is called a complete axillary lymph node Before your surgery, you may need to have Arrange for someone to stay with you for carcinoma in situ), the cancer has been caught dissection. You may need to have a drain pre-admission testing. This can be done at the 24 hours if you go home the same day. early enough that, by definition, it will not placed in the axilla after a complete node hospital or by your family doctor. You will be seen in the lymph nodes. For stage 1 and dissection. be asked your medical history and will have a above breast cancers, your surgeon needs to physical exam and blood work. You may also There may be numbness or tingling in the make sure there is not microscopic spread of need an EKG or a chest X-ray. cancer to the lymph nodes, and this is done underarm or the upper back of the arm after with a sentinel lymph node biopsy. Your lymph node removal. If this occurs after 12 13 Day of Surgery Your Surgery need someone to drive you home and stay Follow-up Care with you for 24 hours. You cannot be left First, you will go to the registration The operating room will feel cool and the alone during the first 24 hours because the You will need time to recover from your department. From there, you will go to the lights will be bright. There will be several anesthesia and pain medication may cause surgery. You may feel tired, and it often takes pre-operative holding area to get ready for other people in the room besides the surgeon you to feel dizzy and unsteady. several weeks to regain your usual energy your surgery: and anesthesiologist — nurses, aides, and level. Sleep and rest as needed. You should scrub techs. The staff will get you positioned If you are staying in the hospital, once you You will be asked to give your name, date not drive as long as you are taking any pain on the table and can cover you with warm are awake you will be moved from PACU of birth, and Social Security number. medication, if your pain remains high, or if blankets. You will have leg pumps placed to another room. Nurses and patient care you are unable to use your arm normally on Your surgical site will be marked. to prevent blood clots. Your surgical team assistants will be taking care of you. The first the surgical side. Your emotional recovery will once again verify the surgery site and time you get up, you need to call for help to Your anesthesiologist will review your may take longer than your physical recovery. procedure before the start of your surgery. make certain you can walk safely. medical and surgical history and ask you Be patient with yourself and ask for support The anesthesiologist will place an oxygen You can have liquids and food, as tolerated, about any problems you may have had from others. with anesthesia. mask on your face and give medication in as long as you do not have nausea from your IV to help you drift off to sleep. The anesthesia. Your IV will remain in place Call your doctor if: You will sign a consent form for length of your surgery will depend on the type until you are taking liquids well, your pain is anesthesia. You have nausea or vomiting that persists of surgery you are having. A lumpectomy controlled, and any ordered IV antibiotics are — this is usually due to narcotic pain You will also need to sign a consent form with sentinel lymph node biopsy takes 1 to 2 completed. medications, so if possible, stop these for surgery after all your questions have hours, a mastectomy without reconstruction Your incision will be covered with a dressing. medicines and try Tylenol or ibuprofen. been answered. takes 1½ to 3 hours, and a mastectomy with This will be left in place until your doctor implant reconstruction takes 2½ to 4 hours. Your drains are accidentally pulled out. You will have an identification bracelet allows you to remove it. Your drains will be A mastectomy with a flap type reconstruction Your drains are clogged. placed on your arm. You will also be given emptied as needed. These help to keep fluid will take longer. an allergy bracelet (if applicable). from building up at the site of your surgery, There is a foul odor, discharge, or redness and if you have them, the nurses will instruct at the drain site. An IV (intravenous) line will be placed After Surgery in the arm opposite from the side of your you how to care for them at home. You will be Your dressings are soaked with drainage. surgery. When your surgery is finished, you will be asked to wear your surgical bra after surgery to decrease swelling at the surgery site. Some You have a temperature over 101.5°F. You will also meet the operating room nurse, moved to the recovery room — the Post swelling and bruising are normal. If swelling You will see your surgeon in about 1 to 3 who will check your ID bracelet and ask about Anesthesia Care Unit (PACU). When you continues to increase, contact your surgeon. weeks. Please call the office to make your any allergies, the last time you had anything to wake up, your throat may feel sore and your follow-up appointment. Do not hesitate to eat or drink, and your birth date. The correct mouth may feel dry from the tube that was call if you think you are having surgical issues surgical procedure and site marking will be placed into your airway during surgery. You before your scheduled appointment. verified again. may be able to have some ice chips. Your surgeon will have your final pathology You may have family members stay with you Your nurse will be checking your pain level report to review with you in the office and until your surgery. Your surgeon will see you and will ask you to rank your pain on a scale will give you a copy for your records. Drains before surgery. This will be a chance for you from 0 to 10. You will be given medication for will be removed in your surgeon’s office. You to review any questions you may still have. pain as needed. Many women report less pain than they expected to have after surgery, but may have Steri-Strips or skin glue placed tell the nurse how you are feeling so you can on the incision, which likely has dissolvable keep the pain managed. sutures as well. If Steri-Strips are still in place, they will usually be removed in the surgeon’s You will stay in the recovery room about 1 office. These look like small pieces of tape and to 2 hours. If you are going home, you may are used to protect your incision until it is be given something for pain to help you stay more healed. comfortable during the ride home. You will 14 15 During the first follow-up visits after surgery, 3. Turn the container upside down and Diet Once your drains have been removed, your any needed referrals to a radiation oncologist empty the fluid into the plastic measuring surgeon may recommend you begin the wall or a medical oncologist will be made unless cup you have been given. Leave the top off Eat a well-balanced diet and drink at least climbing exercises (below). Another way to you met with these doctors before surgery. of the drain. 8 glasses of water a day. Be sure you eat begin to work your hand and arm muscles is enough protein (from lean meats, fish, and Your surgeon will give you a long-term 4. “Strip” the drain tubing. The tubing can to squeeze a ball. Avoid lifting anything over 5 poultry, as well as tofu, eggs, cheese, beans, follow-up plan for your breast cancer. After get clogged, which prevents fluid from pounds with your operative arm for the first 2 yogurt, and milk) to promote healing. Protein recovery, you will see your surgeon between 1 draining to the bulb. You can break up weeks. helps strengthen your immune system and and 4 times yearly, for at least the first 5 years these clogs by using your fingers to squeeze connective tissues, which helps prevent You can do wall climbing (or walking) after surgery. You may also have follow-ups or “strip” the length of the tubing. Strip the lymphedema. You should also avoid alcohol different ways, exercising one or both arms with the radiation and medical oncologists. tubing in the morning and evening after at a time. Doing both of the ways shown emptying the drain. To strip the tubing: and smoking. Caring for Drains below will work your rotator cuff muscles in • Firmly hold the top of the drain tube Activities different directions. This will increase your You may go home with at least one drain. closest to where it exits your skin to range of motion. Your nurse will show you how to care for it prevent the drain from pulling on the Some women find that their underarm area skin. before you leave. You may attach the drainage is the most uncomfortable part of their body Climbing the bulb to your surgical bra to prevent it from • Using your other hand, pinch the tubing after surgery. You may find that: Front Wall — pulling loose or tugging on the skin. with your thumb and index fingers until You are not able to fully raise that arm for Facing the Wall the tubing is flat. a time after the surgery. 1. Stand facing the Emptying Your Drains • Slowly pull your pinched fingers down Your underarm area feels tight. wall with your the entire length of the tubing towards toes about 8 to 10 Empty your drain(s) at least twice a day or You have some numbness or tingling at the bulb. Avoid damaging the tubing inches away from when it is nearly full. Follow these steps: first in that underarm or in the upper back with your fingernails. You may pause the baseboard. part of that arm. and slide your top hand down to meet Place your hands the bottom hand and continue stripping These areas may also feel hypersensitive. on the wall at eye the tubing. This may be done several level. This is your times to allow easier stripping along the The symptoms should gradually decrease as entire length of the tubing. the area heals and more normal sensation starting position. returns. It is important to use your arm for: • Add any fluid from stripping the drain to 2. Walk your fingers the measuring cup Washing your face and bathing straight up the wall, climbing • Use the Breast Surgery Drain Record Brushing your hair as high as you to record the amount of fluid emptied, Dressing along with the date and time. can. Feel your Questions to ask your doctor about shoulder joint 5. Squeeze the container to remove the air and arm muscles and close the top. activity include: working together. 6. If you have a dressing around the drain When can I shower? Move your body site, change it to keep it clean and dry. When can I drive? closer to the wall if you are able to reach up that high. Call your doctor with questions about caring When can I go back to work? 1. Wash your hands well before and after for your drain or if you have signs of infection 3. Hold your hands at the highest point you such as odor or redness around the skin. The When can I do housework? emptying your drain. can manage for about 15 seconds. drains will be removed in your physician’s When can I begin exercising? 2. Pop off the top of the container. office once the output is less than 30 ml 4. Relax your arms and let them slide down to When can I resume lifting? — Be careful to keep the end of the for several days. Be sure to take the Breast your starting position. Surgery Drain Record with you to your post- drain clean. Repeat 3 to 5 times. Your goal is to be able to surgery visit with your doctor. — Avoid touching the inner tip. raise your arms overhead as far as possible. 16 17 Climbing the Side Wall — Once you have completely healed from your When to Have Reconstruction with Side to Wall surgery, one of the best forms of exercise for arm strength and range of motion is Reconstruction Implants and Tissue swimming. This may help to prevent any Breast reconstruction can be done at Expanders lymphedema. the time of your surgery (immediate The tissue expander is like a water balloon Avoid sudden overuse and repetitive motion reconstruction), or it can be done months that is temporarily placed under the chest with your operative arm. When you overuse or years later (delayed reconstruction). muscle and breast skin after your mastectomy. your muscles, they may tire and not contract Immediate reconstruction allows you to It is expanded with saline as much as possible properly to move lymph fluid. have fewer surgeries. But if you decide breast during the operation — but the amount reconstruction is not for you at this point, you of skin left after your mastectomy limits Breast Reconstruction can always change your mind anytime in your full expansion. Patients usually stay in the life and have reconstruction when you and hospital 1 to 2 days. your plastic surgeon think you are ready. Insurance Covers Breast After you recover from this operation, you Reconstruction Some medical conditions such as diabetes, will follow up in the plastic surgeon’s office obesity, high blood pressure, and smoking to have the tissue expander filled with more The 1998 Federal Breast Reconstruction may affect when you have reconstructive saline to gradually stretch the expander to its Law mandates that insurance companies surgery and the type of surgery you can have. full size. This will help your body create new cover reconstruction after mastectomy. This Your doctors will discuss this with you. skin and muscle to cover the expander and includes all types of breast reconstruction, Breast reconstruction is performed create a full-sized breast. including operations on the healthy breast to by a plastic surgeon. With immediate make your breasts look similar. The amount of time it takes to fill the reconstruction, your breast surgeon and expander depends on how large a breast is plastic surgeon will work together as a being made and how much fluid you can You Don’t HAVE to Have team during your surgery. In delayed 1. Stand with your surgery side to the wall tolerate being put into your expander each Reconstruction — It’s an reconstruction, your surgery will be done by time. With each fill, you will feel a tightness with the side of your foot about 8 to 10 your plastic surgeon and may even be done as inches away from the baseboard. Move this Option under the muscle as the expander gets larger. outpatient surgery depending on the type of The entire filling process usually takes about 1 hand about 2 hand-widths forward or at Breast reconstruction is a personal decision, surgery you choose. You can have the surgery least at a 30-degree angle from your body. to 4 months. and each woman should learn about her when you and your surgeon feel you are This is your starting position. options. You may decide that you do not ready. The tissue expander is then exchanged 2. Walk your fingers want the extra surgery, or that you don’t need for a permanent breast implant in a short up the wall, climbing as high as you it because you feel comfortable with your Reconstruction Options outpatient procedure — you can go home the can. Feel your shoulder joint rotating and appearance. If you don’t have reconstruction, same day. The permanent implants used are the same as are used for breast augmentation: your upper arm muscles stretching. Walk you may opt to wear a breast prosthesis. There are two main types of breast your hand up the wall, straightening your reconstruction: using a tissue expander saline or silicone. elbow as you go. Move your body toward A reconstructed breast will not look, function, to stretch the skin and muscle and then the wall if you are able to reach higher. or have sensation like a natural breast. Your exchanging that for an implant, or using your plastic surgeon will create a new breast and own tissue to create a breast. Your plastic 3. Hold your hand as high as you can manage nipple using an implant or your own tissue. for about 15 seconds. surgeon will discuss with you what types may be an option for you, based upon your overall 4. Relax your arm and return to your starting health and physical condition. position. Repeat 3 to 5 times with each arm. This helps work your shoulder joint and upper arm muscles for greater flexibility. 18 19 Flap Reconstruction There is less pain and less risk of abdominal Compression or support stockings, which Breast Prostheses weakness and bulging (hernia). Types of free may be attached to plastic sleeves placed A flap is a piece of one’s own tissue (skin, fat, flaps include: over your lower legs and connected to a If your treatment includes a total mastectomy, and sometimes muscle) that is moved from pump that inflates and deflates to help one area of the body to the chest to create Latissimus Dorsi Flap you may want to visit a store that sells and promote circulation in your lower legs and a new breast. Because your own tissues are fits breast prostheses, mastectomy bras, This flap uses the tissue from your upper back prevent blood clots used, a flap procedure may result in a breast swimsuits, and lingerie. Partial prostheses for to create a new breast. Because the amount of that appears and feels more natural. A catheter to drain your bladder women who have had a partial mastectomy/ available tissue is often not enough to create a lumpectomy are also available. Mount Carmel In general, flap reconstruction procedures are full breast, an implant is usually used as well. Ice chips after surgery, then liquids, has certified fitters who can meet with you, more involved than implant reconstructions. progressing to a regular diet so please ask your Breast Oncology Nurse The length of surgery is about 4 to 5 hours DIEP (Deep Inferior Epigastric Breast reconstruction may not be for Navigator or surgeon for a referral. for one breast and 6 to 7 hours for both Artery) Flap everyone. Carefully consider all of the It’s best to wait to be fitted for a permanent breasts. Longer times may be needed for The DIEP flap leaves the muscle and its reconstruction options and spend time prosthesis and mastectomy bra until about 6 difficult cases. In addition to the scars on fibrous covering (fascia) largely intact. Skin, the reconstructed breast, there will also be talking to your plastic surgeon to decide if it to 8 weeks after surgery. A temporary, fiber- fat, and the deep inferior epigastric vessels are is right for you. Your breast surgeon, medical incisions and scarring on the abdomen. completely separated from the abdomen and filled prosthesis will be provided by the fitter oncologist, and radiation oncologist also need at the time of your surgical bra fitting or by Flap reconstruction procedures can be reattached at the chest. to have input on your final decision. described according to the method by which the Breast Oncology Nurse Navigator before they are moved: SIEA (Superficial Inferior Epigastric your surgery. This temporary prosthesis can Artery) Flap The Other Breast be worn in a surgical or other bra until you Pedicled Flaps have a permanent prosthesis. The SIEA flap is similar to the DIEP flap, If your other breast is a very different size Pedicled flaps remain attached to the body by but uses blood vessels that are closer to the than your reconstructed breast, your plastic To obtain a permanent, silicone-filled breast a bridge of tissue when they are rotated to a surface of the abdominal wall. While it can surgeon can perform a procedure to make prosthesis and bras with pockets to hold it, new location. These generally require muscles reduce pain and the risk of abdominal bulging your breasts more symmetrical. These types your surgeon will write a prescription so that to be included with the flap tissues. The most (hernia), it is rarely an option because the of procedures are generally covered by your your insurance or Medicare can be billed for common type is: blood vessels closer to the surface are often insurance company as well. Your other breast these items. You will want to check to make Pedicled TRAM (Transverse Rectus not large enough. may need a lift (mastopexy), reduction, or sure the shop you visit accepts your insurance. augmentation (enlargement) to look similar An appointment for a fitting should be made Abdominis Musculocutaneous) Flap Muscle-Sparing Free TRAM Flap to the reconstructed breast. in advance so that you have enough time With a TRAM flap, one end of the muscle To make this flap, a small portion of six-pack with a fitter to make a decision about which remains attached in the abdomen. The muscle muscle is used along with the skin and fat. prosthesis and bra styles you prefer. and fat are tunneled under the skin to reach Because it is a free flap, blood vessels need to Nipple Reconstruction The Mount Carmel Cancer Care Boutique the breast area. There is a risk of muscle be reattached. weakness because the “six-pack muscle” is This can be done 3 to 6 months after your first also carries swimsuits, exercise and leisure removed from the abdomen. After Flap Reconstruction surgery. The plastic surgeon creates a three- wear, and other items. dimensional nipple using the tissue on your Free Flaps For information about various boutiques and You will be in the hospital about 3 to 5 days. breast. The areola (the dark part around your their services, refer to the insert sheet in the Free flaps are completely removed from the You may have one or more of the following nipple) is created using a skin graft or a tattoo. front pocket of this booklet. body and transplanted to a new location. right after surgery: This is an outpatient procedure, so you can go The surgeon uses microvascular techniques home the same day. Oxygen by mask over your mouth and to reattach the blood vessels of the flap to nose, or by a tube in your nose the blood vessels on the chest. This type of surgery allows the muscle to remain intact An IV line for pain and antibiotic and prevents muscle weakness because the medications flap only consists of skin and fat, not muscle. 20 21 Treatments Oncotype Dx Test Chemotherapy The Oncotype Dx test is used in women with Following surgery, systemic (body-wide) early-stage breast cancers that are estrogen anti-cancer treatment is often recommended Radiation Therapy could be red or bloody drainage around and/or progesterone receptor positive and to eliminate any microscopic tumor cells the catheter for the first few days. As with lymph node negative. Breast cancer tissue that that might remain in the body. This type Radiation therapy is likely to be part of your external beam radiation, patients can have has already been removed from the breast is of therapy is called adjuvant therapy, and breast cancer treatment if you have a partial some skin irritation and fatigue from these sent to a special lab where certain genes are it is a very important part of breast cancer mastectomy/lumpectomy. It is sometimes treatments. analyzed to rate that specific woman’s risk for treatment. Adjuvant systemic therapy may part of the treatment after a mastectomy. The Intraoperative radiation therapy (IORT) is a breast cancer recurrence. significantly decrease the chance that the purpose of radiation therapy is to use high- a new form of radiation therapy delivered The breast cancer is designated as being at cancer will return (or recur), and it may also energy X-rays to destroy any cancer cells that in a single dose that is given in surgery low, intermediate, or high risk for recurrence. improve a woman’s chance of surviving her may remain in the breast and to limit the risk while under anesthesia. IORT can reduce These results are used to help guide decisions cancer. In certain circumstances, systemic of cancer recurring at the surgery site. the time of treatment, radiation exposure regarding needs for chemotherapy. therapy is given before surgery, and this is Before your radiation treatments begin, you and some of the potential side effects of called neoadjuvant chemotherapy. Breast cancers that are at low risk for will meet with a radiation oncologist, a doctor conventional radiation therapy for women recurrence generally do not need treatment There are three options for systemic who specializes in the use of radiation to treat undergoing breast conservation surgery with chemotherapy. adjuvant therapy of early-stage breast cancer: cancer, to discuss which treatment is best for (lumpectomy or partial mastectomy). endocrine therapy (anti-hormone therapy), you. In the case of breast cancers, there are There is very specific criteria that must be Results that come back as intermediate risk chemotherapy, and biologic targeted therapy multiple ways to give radiation therapy: met to be eligible to receive IORT. Your are discussed further by the oncologist and with trastuzamab (Herceptin). The choice of patient to decide what treatment would be The most common way to receive physicians will determine whether IORT is which of these treatments is recommended best. radiation is through external beam an appropriate treatment for your cancer depends upon whether the breast cancer is radiation to the whole breast. It is given type. Results that are high risk generally do need hormone responsive (estrogen/progesterone by a machine called a linear accelerator. chemotherapy. positive), and how much it makes of a protein called HER2/neu. The treatment is daily, Monday through This test allows some women who are at Friday, and can last anywhere from 4 to 6 “I read somewhere that you low risk, who in the past would have had Chemotherapy medications can be used in weeks. Side effects to the breast are usually can’t change the direction of chemotherapy, to forgo this treatment and a number of different combinations. Most mild. The two most common side effects the wind, but you can adjust the avoid all its potential side effects and risks. of the time, they are given by IV once every during the course of treatment are skin sails. It reminds me that we have However, this test, though helpful, should 1, 2, or 3 weeks. Because chemotherapy is irritation and fatigue, which can increase not be the sole factor in deciding whether based on each woman’s pathology, needs, as you receive more treatment. the power to chart the course of chemotherapy should be given. Results need and overall health, you may have a different Some women can have partial breast our own lives regardless of the to be used in the context of the complete schedule than someone else. Also, as new irradiation using HDR (high-dose-rate) circumstances. Healing comes in clinical picture. findings emerge from breast cancer research, the medications, combinations, doses, and brachytherapy. A catheter is implanted the attitude that we bring to our The Oncotype Dx test is covered by most, but schedules can change. Your chemotherapy into the breast by your surgeon and not all, insurers. It is important to check your lives and to our illness.” nurse can provide you with more information then treatment is delivered twice a day coverage before agreeing to the test, as it is VELMA WAGNER, Silver Linings on your specific medications, what to expect, for 5 days. The catheter is removed after — quite costly. treatment is completed. Side effects with and how side effects are managed. Oncotype Dx is the most widely used risk partial breast irradiation are usually mild Chemotherapy agents target cells in the body stratification tool in the United States, but as well. There is a small risk of infection that grow quickly. This can result in side there are others using different methods that at the catheter insertion site and inside effects such as hair loss, changes in blood may also be used by the oncologist in certain the cavity. Your doctor and nurse will cell counts, and nausea. The most important circumstances, such as Mammostrat and watch for any signs of infection. There thing to remember when chemotherapy Mammoprint. 22 23 is recommended is that each person has Anti-hormone Therapy alone or after an AI has been taken. The Patients take part in clinical trials for many a somewhat different response to these length of time of anti-hormone treatment reasons. One reason may be a hope of feeling medications. Some people have many side Anti-hormone therapy is medication that for this group of women may be 5 years or better or of living longer. Patients often want effects while others have very few. No matter alters how the body’s hormones behave. It longer. to take part in a research effort that may help what stories you may hear about how other is used to decrease the chance of recurrence Anti-hormone medications, like all others in the future. people felt during their treatment, your and/or the spread of some breast cancers. medications, may cause some side effects. Every clinical trial has an action plan, called experience may be different. Estrogen and progesterone are female Tamoxifen may bring about side effects like a protocol, which explains how the study will hormones produced in the body, mainly those of menopause. These may include hot work. This is reviewed by an independent Biologic Agents/ by the ovaries. They are also produced in flashes, vaginal dryness, menstrual periods committee to ensure that the research will smaller amounts by other organs. If your stopping, or decreased sexual desire (libido). not expose patients to extreme or unethical Targeted Agents pathology studies reveal that the tumor cells Side effects of AIs can also include joint and risks. Each study’s protocol describes what is muscle arthritis-like discomfort and bone required for patients to take part in the study. These types of drugs act only on the cancer are “estrogen/progesterone receptor positive,” loss (osteoporosis). Women who have been cells. The most common of these in breast it means that these hormones may contribute It is important that you know your rights and through menopause who are taking AIs cancer treatment is Herceptin (trastuzumab). to the growth of your breast cancer. If your protections with clinical trials: tumor is “estrogen/progesterone receptor may have renewed or increased menopausal Herceptin may be used when a breast cancer Taking part in a clinical trial (study) is up negative,” these hormones do not affect the symptoms. is found to overexpress a specific protein to you. called HER2/neu, which occurs in about 25% breast cancer’s growth. If you were taking any hormone replacement You will receive the same quality of care of cases. When the pathology report shows the medication before your breast cancer diagnosis, you will likely be told to stop whether or not you take part in a study. Herceptin tends to have fewer side effects breast cancer to be estrogen or progesterone taking it. Stopping hormone replacement If you do enter a study, doctors and nurses than standard chemotherapy does. It usually receptor positive, and you are premenopausal, medications may also bring about symptoms will carefully follow your response to does not cause nausea, hair loss, or blood cell your oncologist may prescribe tamoxifen. of menopause. See page 38-40 for ways to deal treatment throughout the research. count changes. If you start treatment with This is a pill that helps prevent naturally with these symptoms. standard chemotherapy agents and continue occurring estrogen in the body from acting If your doctor suspects that a treatment Herceptin after the other chemotherapy is on breast cancer cells. Tamoxifen is the only may be harming you, you will be taken out completed, your hair may grow back while anti-hormone medication that is effective of the study immediately. You may then having IV Herceptin treatments. Herceptin in women who have not yet undergone Clinical Trials receive other standard treatment. can occasionally cause a reversible form of menopause. The recommended length of time A clinical trial is a research study conducted You have the right to leave a study at any heart failure. Your doctor will likely have you for a woman to take tamoxifen is with patients to evaluate a new treatment time. get periodic evaluation of your heart with an 10 years. or a change in a treatment that is already in Before deciding to participate in a clinical echocardiogram or MUGA scan while you are In women who have gone through use. The goal of this research is to find new trial, you must give informed consent. This on Herceptin. menopause, and have estrogen- and/or and better ways to treat cancer and to help means that you must be given all the facts progesterone-positive breast cancer, anti- There are other “targeted” agents that cancer patients. Before a new treatment is about the study. These include details about hormone medications called aromatase may be used for breast cancer in certain offered, it is carefully studied in the laboratory the treatments and tests you may receive and inhibitors, or AIs, may be prescribed. AIs circumstances. and needs to show promise of good results. about possible risks and benefits. You must are used only in women who have already Clinical trials help find out if new or changed sign an informed consent form before you can gone through menopause, due to the way treatments are safe and effective for patients. enter a study. Ask your doctor and the staff in which these medications work. Although any questions you may have before signing AIs work differently than tamoxifen, the Participation in a clinical trial is entirely the consent form. end result is the same — a decreased effect voluntary. You may be interested in or asked of estrogen on breast cancer cells. Arimidex, to enter into a clinical trial. Learn as much You can also request a copy of the booklet Femara, and Aromasin are commonly as you can about the trial before you decide Taking Part in Cancer Treatment Research used AIs. Sometimes in women who are whether to participate. Studies. Call the National Cancer Institute at postmenopausal, tamoxifen may be given 1-800-4-CANCER, or go to www.cancer.gov or www.clinicaltrials.gov. 24 25 Family History Who should consider genetic counseling? Managing Side Effects Most breast cancers happen by chance and the People who can benefit from genetic cause is often unknown. About 90% to 95% of counseling include those who: breast cancers are this type. Fatigue Are very anxious about their cancer risk “The purpose of life, after all, is to About 5% to 10% of breast cancers are due to the number of cancer occurrences Fatigue can occur during or after treatment. live it, to taste the experience to thought to be hereditary — caused by in their family You may have a lack of energy for doing daily abnormal genes passed on from parent to the utmost, to reach out eagerly Want more information about the genetic activities, including things that you normally child. There is a greater chance that a person enjoy. and without fear for newer and with the gene may develop cancer in a basis of their cancer — either acquired or Some of the causes of your fatigue may be: richer experience.” lifetime, but not all people with it will develop hereditary cancer. What happens when you see a genetic Stress, anxiety, or distress — ELEANOR ROOSEVELT, quoted in The Climb counselor? of My Life by Laura Evans Using your medical and family history, your Trouble sleeping doctor will assess your risks for hereditary During genetic counseling, your personal and Nausea, vomiting, and diarrhea breast cancer. Based on this, your doctor may family cancer history will be reviewed. This Problems with nutrition refer you to a genetic counselor. includes types of cancer and ages of diagnosis. Hair Loss Low blood count such as anemia, a A certified genetic counselor will then: A genetic counselor is an expert in changes decrease in the number of red blood cells One of your first thoughts when you learn in genes that are related to disease. The Evaluate your risk of inherited cancer that carry oxygen to tissues that you need chemotherapy may be about counselor can tell you more about how likely Describe genetic testing options Some of the things you can do to help ease losing your hair. These may be some of the you are to have hereditary breast cancer. He your fatigue include: questions that you need answers to: or she may suggest that you have genetic Discuss the benefits and limitations of Is there a medical term for hair loss? testing to look for changes in genes that testing including insurance coverage and Getting enough rest and sleep. Take a increase your chances of developing breast confidentiality short nap in the morning or afternoon if Yes. You may hear the word “alopecia,” which you feel tired, but don’t spend most of the means hair loss. cancer. Help you decide if genetic testing is right day in bed. for you What causes hair loss during Staying active. Light, regular exercise such chemotherapy? Chemotherapy Explain the procedure for ordering genetic Cancer Genetics Program as walking can help your energy level. Plan affects rapidly growing cells, and hair testing to get some form of exercise each day. follicles are rapidly growing cells. Low- The Mount Carmel Genetics Program Talk to you about medical management Eating as healthful and varied a diet as you dose chemotherapy causes the hair shaft provides cancer risk assessment, education, options based on your family history and can. Drink plenty of water or other fluids to constrict and break off. High-dose and research to identify testing options each day, unless you have been told by chemotherapy destroys the hair shaft. high-risk families. The genetic counselor your doctor to limit fluids. helps family members understand their risk Discuss the emotional impact on you and Will I lose all my hair during for developing cancer as well as their options your family Eating smaller meals throughout the day chemotherapy? Depending on the type of for preventing, detecting, and treating the to give you more energy. Your body uses chemotherapy you receive, your hair may If you have breast cancer and have a positive less energy to digest small meals. disease. If you would like more information, genetic test, your doctor will discuss with you thin, or you may lose all of it. please talk with your Breast Oncology Nurse how this result may affect your treatment Allowing time to do the activities that you Will my hair come back? Hair loss due to Navigator or call the Mount Carmel Genetics decisions. enjoy. Accept help from your friends or chemotherapy is temporary. Your hair will family members with meals, chores, and Program at 614-234-6848. grow back after your chemotherapy ends. It errands. may grow back a different color or texture. Talking about your feelings with friends For example, if your hair was straight, it may and family members with whom you feel grow back curly. comfortable.
26 27 What are some helpful ways to deal Lymphedema Preventing Lymphedema If your arm gets tired with any activity, with hair loss? stop and rest. The most important thing you can do is to Lymphedema is swelling of the breast Drink plenty of fluids to stay hydrated. Wash your hair gently with a mild learn ways to help prevent lymphedema area, arm, or hand that is caused by the shampoo and conditioner. from occurring. You can become your Maintain a normal body weight. accumulation of a protein-rich fluid. It may own advocate by knowing ways to protect If possible, have injections, blood pressure Cut hair as short as possible. also include numbness or rashes on the your arm and breast. If lymphedema measurements, blood draws, and IVs on Avoid teasing, curling, perming, bleaching, affected arm. Lymphedema may occur right does occur, recognizing early warning the unaffected side. If lymph nodes were dyeing, and using hair spray. after your surgery, or sometimes weeks or signs are important. It can be controlled removed from both sides, use the arm years after surgery or radiation for breast Use a soft-bristled brush. if it is recognized and treated at an early with the fewest number of lymph nodes cancer. Surgical removal of lymph nodes, stage. About 90% of those who develop removed. Be sure to keep injection sites Wear a hairnet at night to prevent radiation, infection, and trauma can all result clean and covered for 24 hours after the lymphedema will show signs in the first 3 shedding. in lymphedema. If you have had any lymph puncture occurs. years. You may choose to wear a wig, scarves, nodes removed from under your arm, you are If a break in the skin occurs, watch for and/or hats. Most women use a at risk for lymphedema. There is a higher risk redness and signs of infection. Call your combination of these items over time. of lymphedema if you have a full axillary node Early Warning Signs doctor right away if you see signs. Some women prefer to go without any dissection, because more lymph nodes are Know these early warning signs of possible Avoid exposure to extreme temperatures, head covering. removed in that procedure. lymphedema that should be checked by your hot or cold. Be Depending upon the weather, you may The lymphatic system is a giant filtration doctor: cautious about using hot tubs and saunas and wear gloves during cold weather. need to keep your head covered to prevent system that keeps the body’s fluids balanced Pain in your breast, arm, or hand that does sunburn or heat loss. and removes waste products. Lymph nodes not go away as you heal after surgery Try to avoid any accidental cuts, burns, or are a part of this system and act as filters bites to the affected arm by: When should I buy a wig? Selecting a wig Heaviness, numbness, fullness, tightness, that remove waste products from your body. • Wearing gloves for gardening and while you still have your hair will help you or tingling in your arm, hand, or fingers You have about 600 to 700 lymph nodes oven mitts while cooking match your hair color and style, if that is your throughout your body. Redness or swelling in your hand, arm, or • Using sunscreen and insect preference. breast area There are lymph nodes under your arm, as repellent You may want to ask your doctor for a well as in and around your breast. When Problems fitting into your shirt sleeves or • Being extra careful around sharp prescription, as some insurance companies lymph nodes or lymphatic tissues are cuffs objects cover at least part of the cost. damaged or removed in surgery, the lymph Tightening of rings or watches • Not cutting your cuticles For detailed information about where to fluid may not drain as well from these areas. Do not wear tight jewelry or elastic bands purchase these items, see the insert sheet in This backup of fluid is called lymphedema. Safety Measures on your arm the front pocket of this booklet. You are at risk for lymphedema in the arm These measures will help keep your arm safe: Keep regularly scheduled follow-ups with that is on the same side where lymph nodes your doctor for ongoing surveillance. Keep your skin well moisturized with mild were removed or the same side where you See your doctor for any signs of infection lotions as needed. had radiation. Chemotherapy, infections, and in your at-risk hand, arm, or breast area: obesity (having a BMI greater than 30) also Dry your skin carefully. • Redness increase your risk of lymphedema. Avoid cuts when shaving under the arm. • Warmth Use electric razors as needed. • Pain • Swelling Once you are cleared to resume exercise • Fever by your surgeon, be certain to increase the intensity slowly. While any exercise for the Don’t ignore changes in your hand, arm, affected arm is helpful, do not continue to forearm, or chest. Report any changes in increase intensity if your arm gets sore or size, sensation, color, temperature, or skin swollen after exercising. condition to your doctor. 28 29 Lymphedema Treatments Compression Digestive Side Effects Nausea and Vomiting Sleeves/Gloves Nausea and vomiting are common side effects Lymphedema treatment is done by a physical Constipation therapist that has specialized training. While These are garments that are made from of chemotherapy. Medications are given to treatments for lymphedema will not cure stretchy, tight elastic fabric. You will need Constipation is common in people prevent and manage nausea. Many people it, they can be very effective in decreasing to be measured and fitted by a professional undergoing cancer treatment. You may feel have little or no nausea. Be sure to talk to your swelling and relieving discomfort. You can therapist to get the correct fit for your arm bloated and uncomfortable or have difficulty doctor, nurse, or dietitian if you continue learn to manage the swelling. Treatments will and hand. The fit should be checked every 6 to having a bowel movement. Your stools to feel nauseated despite taking anti-nausea usually include manual lymphatic drainage 12 months or if you have a significant change may become dry and hard. During cancer medications. Some anti-nausea medications to move the proteins within the lymphatic in your body or arm size. These garments are treatment, constipation may be caused by: work better than others for certain people. If system and compression (bandages or one has not helped with your nausea, your worn during the day and removed for sleep. Chemotherapy or other treatments garments) to move fluid within the system. The purpose is to prevent the swelling from doctor may have you try another. returning between MLD and compression Pain medication If you are feeling queasy or nauseated, you Limb Elevation sessions. The garments also need to be worn A low-fiber diet may want to try to: for air travel, especially if you are taking a This may help control early arm swelling. Ignoring the urge to have a bowel Eat 6 to 8 small meals a day, instead of 3 Elevate your arm on a pillow while you are long flight. movement large meals. sitting in a chair or lying in bed to promote Decreased fluid intake Sip small amounts of fluid often instead of lymph drainage. Mention this swelling to Exercise drinking large amounts. your doctor. Eventually in most cases, if Too little exercise Gentle strengthening and stretching of the untreated, elevating your arm will not resolve Drink your fluids between meals instead of affected area can help to move fluid out of Talk to your doctor about taking a stool the swelling. with meals to avoid vomiting. the affected area and prevent episodes of softener or laxative if you are taking pain worsening swelling. It is important that the medication. Eat dry foods, such as crackers, toast, dry Manual Lymph intensity of any exercise is increased slowly to To help prevent constipation: cereals, or bread sticks, when you wake up, prevent a worsening of the edema. and every few hours during the day. Drainage (MLD) Drink at least 8 to 10 cups of fluid each Eat bland foods that do not have a strong MLD is not like traditional massage therapy day. Try water, prune juice, warm juices, odor. that targets deep tissues and muscles. MLD tea, and hot lemonade. Your body needs uses light, gentle skin massage to create the fluids to keep your stools soft. Eat cool foods instead of hot, spicy foods. pathways within the body to move fluid Eat high-fiber foods if you are able. Whole Avoid foods that are overly sweet, greasy, toward healthy lymph nodes. A physical grains, bran cereals, fruits, vegetables, fried, or spicy, such as rich desserts, therapist will do your MLD and teach you a nuts, and popcorn, as well as cooked dried French fries, and other fried foods. modified version to do at home. beans, peas, and lentils, are good sources Sit up or recline with your head raised for of fiber. at least 1 hour after eating if you need to Compression Therapy Eat at regular times each day to help form rest. Compression therapy is the use of foam good bowel habits. Suck on hard candy, such as peppermint, and specialized bandages to compress the Take short walks or do other light exercise. lemon, or ginger. Try drinking ginger ale affected area to continue to move fluid. These or ginger tea. bandages are worn just at night or all day Check with your doctor before taking any depending on the severity of the edema and over-the-counter laxatives or enemas. whether you are in the acute or chronic phase Your doctor may want to prescribe a stool of managing the edema. softener.
30 31 Diarrhea Nutrition, Exercise, and throughout the day — schedule small Prepare your food with low-fat cooking meals and snacks every 2 to 3 hours. methods such as broiling, baking, and Diarrhea can also occur as a side effect Weight Management steaming. of cancer treatment. To help prevent and Eat whenever you are hungry. manage diarrhea: Good nutrition is an important part of cancer Drink fluids if you can’t eat solids. Try Use nonstick pans while sautéing so no added fat is needed. Identify foods that may be causing treatment. A healthful diet can boost the milk shakes, soups, juices, and nutrition diarrhea. immune system and provide strength and drinks such as Ensure®, Boost®, or Carnation Reduce the amount of calorie-dense baked energy. You may want to consult a dietitian to Breakfast Essentials®. foods you eat, including muffins, cookies, Eat small, frequent meals and snacks help plan for your individual nutrition needs throughout the day. If possible, let others prepare, serve, and cakes, and quick breads. during and after cancer treatment. Eat low-fiber foods such as white bread, clean up meals. Try frozen meals. There are many books and a lot of crackers, white rice, cooked vegetables, Remember that changes in your taste or Other Nutrition Issues information on the Internet about breast and Cream of Wheat. Choose foods with appetite will go away after your treatments are cancer and nutrition. Some of these books soluble fiber such as applesauce, bananas, completed. Safe Food Handling and potatoes without skin. Limit foods and information are not based on science- high in insoluble fiber such as bran cereals, proven evidence. You may read about Weight Gain Some cancer treatments can make you more cooked dried beans, raw vegetables, and recommendations for supplements or radical likely to get infections, including food-borne whole grain breads, cereals, and pasta. diet changes that could affect your cancer Weight gain may occur during breast cancer illnesses. It is important to be careful in treatment. Talk with your doctor, nurse, or Avoid gas-producing foods such as treatment. Do not try to lose weight while handling, preparing, and storing food. Follow dietitian before you make any major changes broccoli, cauliflower, Brussels sprouts, receiving chemotherapy or radiation therapy. these guidelines if you have been told that you in your diet or start taking any vitamins, cooked dried beans, and cabbage. Your treatments are determined from your are at high risk for infections: minerals, or herbal products. body weight, so it is important that your Keep hot foods hot, and cold foods cold. Try not to eat spicy, fatty, fried, or very weight remains stable. Eat as healthful and sweet foods. Put any leftovers in the refrigerator Nutrition and nutritious a diet as possible. If you would immediately after a meal. Avoid sugar-free foods containing sorbitol Cancer Treatment like to lose weight, you can make some or other sugar alcohol products like sugar- changes in your diet after you have finished Scrub all raw fruits and vegetables before free candy and sugar-free gum. While having chemotherapy, you need to chemotherapy and radiation treatments. For you cut them and eat them. Do not eat foods that are difficult to clean such as Avoid alcohol and caffeinated products stay well enough to maintain your treatment the best approach to weight loss: schedule. This means avoiding infections raspberries, strawberries or sprouts. Use such as coffee, tea, or chocolate, which can Do at least 30 minutes of moderate activity during times when your white blood cell clean water — do not use soap, bleach, or irritate your bowels and worsen diarrhea. three or more times each week. count is low, and eating nutritious foods that detergent. Drink plenty of clear liquids such as water, can help you to maintain and manage your Choose lean cuts of meat such as chicken, broth, or sports drinks. Wash your hands, knives, and countertops weight. You may find that your appetite is turkey, fish, and lean beef. before and after preparing food. Use one Avoid very sweet liquids. good most days. The prescription anti-nausea Try to eat protein-rich foods with all meals cutting board for meat, fish, and poultry Limit milk and milk products or choose medications are helpful in preventing and and snacks. and another cutting board for fruits and lactose-free options. reducing nausea. Chemotherapy often alters vegetables. Increase the amount of fruits and taste, so some foods may not be appealing. Talk to your doctor about medications to vegetables you eat and eat a colorful Thaw meat, fish, and poultry in the Other foods may leave a strange taste in your help control diarrhea. variety. refrigerator, not on the countertop at mouth. Some women find that salty or sour room temperature. If you are having soreness, protect the skin foods taste best during chemotherapy. Avoid high-fat, high-calorie snacks such as around the rectum by washing with warm chips, cookies, candy, and ice cream. Cook meat, fish, and poultry until If you have a low appetite at times, try to: water and mild soap. Gently pat the area thoroughly cooked. Meats from the deli Reduce added fats in your diet such as dry. Ask your doctor or nurse to suggest a Eat foods that are appealing. and hot dogs should be heated until salad dressing, margarine, mayonnaise, protective ointment or gel to keep your skin steaming. Eggs should be cooked hard, not Keep favorite foods close at hand. and gravy, or try low-fat varieties. from getting worse. Remember to wash your runny. hands well to avoid infection. Eat small amounts of food often 32 33 Do not eat sushi, uncooked oysters, or any Alcohol raw fish or shellfish. Survivorship — New Beginnings Research has shown that high alcohol intake Only consume milk, juices, and honey that may increase breast cancer risk. Alcoholic have been pasteurized. drinks may also worsen hot flashes in women Your Survivorship Avoid cheese made from unpasteurized who are menopausal. Women should drink “Today I reach out to hold the no more than one alcoholic beverage per day. At the time you receive a cancer diagnosis, milk and moldy cheeses such as blue hand of others with cancer, cheese and Roquefort. you become a “cancer survivor.” Survivorship can be a new beginning with new directions knowing that our shared Do not consume foods or beverages that Body Weight and a new meaning to life. Survivors journey binds us for life.” are past their freshness date. Excess body weight may play a role in the often find new interests, opportunities, — PHYLLIS KATZ, Do not buy foods from bulk bins. development of breast cancer, especially after relationships, spiritual awakenings, and Silver Linings menopause. Fat cells store estrogen, and it is identities as a result of their cancer diagnosis Do not eat from buffets, salad bars, or self- the exposure to this extra estrogen that may and treatment. service counters. increase the risk of breast cancer or risk of An important part of your cancer care is your Adopting healthy lifestyle behaviors such breast cancer recurrence. Survivorship Care Plan. This is a treatment as exercising, choosing healthy foods, and Soy summary that organizes all your cancer maintaining your recommended weight may Recent research involving large populations treatment into one document. help to decrease the risk of cancer recurrence. of breast cancer survivors have shown that At Mount Carmel we want you to know that Following your doctor’s recommendations eating moderate amounts of soy foods is safe we will be a source of support to you even for ongoing follow-up and surveillance for breast cancer patients and breast cancer after you’ve completed your active treatment. is important for early detection of cancer survivors. A moderate intake of soy is Your Survivorship Care Plan is an essential recurrence. 1 to 2 servings per day of whole soy foods part of the transition from cancer patient Your Survivorship Care Plan summarizes such as tofu, soy milk, and edamame or soy to long-term cancer survivor. It provides a your cancer treatment and will provide you nuts. Including whole soy foods in your diet record of your care so you can move forward with guidelines for ongoing surveillance is a good way to include quality protein while feeling confident that you will be supported and follow-up. The care plan helps you to eating more plant-based foods. and guided through your post-treatment care. coordinate care between all your doctors. Your Survivorship Care Plan will include: There are possible treatment-related Organic Foods A detail of your diagnosis side effects that you should discuss with your doctor: There have not been any direct human studies A summary of the treatment you received that have shown that eating organic foods will — surgery, radiation, chemotherapy Fatigue prevent cancer. There is also not consistent Contact information for your care team Weight gain evidence that organically grown foods are Guidelines for follow-up care — who you Pain, numbness, or loss of sensation in more nutritious. will see and how often your hands or feet Some people will choose organic foods Important recommendations for healthy Impaired range of motion or swelling in in order to limit their intake of chemical behavior and preventative care — your hand, arm, shoulder, or chest fertilizers, insecticides, and herbicides. The managing the effects of cancer treatment, Joint or bone pain important thing is to eat lots of plant foods — watching for long-term effects, and Shortness of breath or chest pains whether grown organically or conventionally. monitoring possible signs of recurrence or Eating a diet containing lots of fruits, second cancers Radiation skin changes vegetables, and whole grains outweighs any The chance to address any concerns you Menopausal symptoms health concerns about chemicals used in the may have with the transition into long- Self-image concerns growing of food. term survivorship Depression 34 35 Breast Cancer Survivorship Take Care of Your Body, Fertility After Individual Considerations Care Recommendations Mind, and Spirit Cancer Treatment The success rate of fertility preservation Adopt healthy lifestyle behaviors: These are some suggestions that may help you depends on the women’s age and the type care for yourself as a cancer survivor: If you are diagnosed with breast cancer of treatment they are considering. It can be Eat a plant-based diet with a wide variety at a young age, you may be wondering if difficult to give a woman an accurate idea Join a support group or survivorship of fruits, vegetables, and whole grains. you can safely have a child after treatment. of her chances of keeping her fertility after program, where you can share and Limit red meats and processed meats. Information is limited about the effects of breast cancer treatment. Doctors will consider celebrate stories of survivorship. Control portion sizes as needed for weight pregnancy on a woman who has had breast individual factors when planning the type of management. Volunteer. cancer. However, women have had healthy treatment. Maintain a healthy weight. Utilize church or spiritual support babies after breast cancer treatment. You Your decision about pregnancy following services. should talk to your medical oncologist to Limit alcohol to no more than one drink breast cancer treatment is an individual one. learn about the risk of infertility with your per day. Include family, friends, partners, and It is important to gather as much information support persons in working through and specific treatment plan. as you can so you can make an informed Quit smoking. coping with survivorship and stressors decision. Your doctors can assist you by Limit physical inactivity: Limit computer, that may occur. Pre-treatment Consultation providing information and answering your TV, tablet and other screen time in order To reduce your stress level, you may want If you want to get pregnant after breast cancer questions. to reduce the amount of time spent sitting. to try journaling, exercising, traveling, treatment, it is important to talk to your If you need to work on a computer during reading, gardening, cooking, or listening doctors about your fertility options before Pregnancy After Treatment the day, take short walks whenever you to music. Meditation, guided imagery, you start treatment. Some chemotherapy can. massage, and acupuncture may also be It is generally recommended to wait 2 years drugs can cause early menopause and lead after the completion of cancer treatment Exercise regularly: Get at least 150 minutes helpful to you. to infertility. All premenopausal women to get pregnant. There may be different of moderate exercise every week. You can should be informed about the potential recommendations based on your situation. do this by exercising at least 30 minutes Keep Up with All of Your impact of chemotherapy on their fertility. It is important to talk to your doctors about for 5 days every week. Examples of Follow-up Care in Your They should be asked about their desire your desire for pregnancy and the timing of moderate exercise include brisk walking Survivorship Care Plan for future pregnancies. Women who may pregnancy after treatment. (15 minutes per mile), dancing, bicycling, want future pregnancies should be referred and pushing a lawn mower. Keep follow-up surgical, medical, and to fertility specialists before chemotherapy Birth Control After There are many positive benefits of regular radiation appointments. and/or hormone therapy to discuss their exercise for survivorship. Regular exercise: Get your vaccines for flu, pneumonia, options based on their specific kind of tumor Treatment (which determines the type, sequence, and and shingles as recommended by your The use of hormonal birth control is generally Helps to reduce fatigue that may occur as urgency of treatment). If it is decided that a oncologist. considered unsafe for premenopausal women a result of your cancer treatment. pregnancy after treatment would be relatively Follow your care plan order for physical with a personal history of breast cancer. Most Improves your heart, lung, and lymphatic safe, options for preserving fertility will be exam, monthly breast self-exam, Pap test, doctors recommend using barrier methods of circulation. examined. mammogram, colonoscopy, and bone birth control such as condoms, diaphragm, or Benefits your bone health and may help density testing. non-hormonal intrauterine devices (IUDs). prevent fractures. Maintain your overall health through If oral contraceptives are felt necessary, those Improves mood and helps decrease regular dental and vision care, blood containing the lowest amount of estrogen are feelings of depression. pressure checks, and lab work for generally preferred. The risks and benefits cholesterol, blood glucose, and vitamin D need to be discussed carefully with both Improves sleep patterns and may even levels. your oncologist and your gynecologist. help with hot flashes. Take all prescribed medications as ordered. If you have financial concerns, check into resources for assistance. 36 37 Menopause notice a chill following the hot flash. Hot of cinnamon and eucalyptus are uplifting, Vaginal moisturizers are used to decrease flashes that occur during the night are called while the aroma of lavender and orange can dryness, irritation, and burning. Replens Menopause is defined as the end of the night sweats. These can cause severe sweating be soothing. Relaxation techniques can also be and K-Y Long Lasting Vaginal Moisturizer menstrual cycles. It can occur naturally or and interfere with sleep. A lack of sleep often helpful for insomnia. are two of these products. These are used 2 suddenly as a result of having both ovaries impacts how we feel during the day and may to 3 times per week to help keep the vaginal removed (bilateral oophorectomy) or with lead to irritability. Acupuncture and Hypnosis walls moist. They can be used anytime, day chemotherapy. Natural menopause is gradual Both acupuncture and hypnosis, two types of or night, but should be used at least 2 hours and occurs when a woman has not had a Methods of Dealing with Hot Flashes alternative and complementary therapy, have before intercourse. Some women notice a vaginal residue when using moisturizers like period for 12 months. Women who are Layered Clothing been shown to be effective in reducing the premenopausal at the time of their diagnosis severity and frequency of hot flashes. Replens. Using it less often may reduce the of breast cancer and become menopausal as a Being able to add or remove clothing can amount of residue. be helpful in relieving heat and adjusting to result of surgery or chemotherapy often have Medications If vaginal dryness is affecting your quality of feeling cool after a hot flash. an abrupt onset of menopausal symptoms. There are medications that may reduce hot sex life, discuss with your doctor if vaginal Not every premenopausal woman who Diet flashes. Please discuss your options with your estrogen is an option for you. Estrogen can receives chemotherapy becomes menopausal. doctor. be absorbed through the body, which could Certain foods and drinks such as those with increase the risk of breast cancer recurrence. Some women return to having normal caffeine (found in coffee, cola, and chocolate), Dietary Supplements and Herbals menstrual cycles. The closer a woman is hot spicy foods, and alcohol (especially wine) It is very important to tell your doctor if you to a natural menopause when she receives may increase hot flashes. It can be helpful to Check with your oncologist before taking have any vaginal spotting or bleeding while chemotherapy, the greater the chance is keep a food diary and note what you have any dietary supplements or herbals using vaginal estrogen. she will become menopausal. About 50% of had to eat or drink before a hot flash to see Problems Sleeping women under the age of 40 will restart their if certain things seem to trigger your hot Other Issues Related periods after chemotherapy. flashes. Avoiding these foods and drinks If you are having problems sleeping, you may want to: Most women who are diagnosed with breast may be helpful. Also, drinking ice water or to Menopause cancer are postmenopausal. Some women eating frozen grapes when a hot flash is about Vaginal Dryness Avoid heavy meals in the evening. may have been taking hormone replacement to begin can help decrease the severity of The loss of estrogen from a woman’s body Avoid alcohol, caffeine, and nicotine therapy for menopausal symptoms even symptoms. throughout the day. can lead to thinning of the vaginal walls before their final period. When a woman is and vaginal dryness. This can cause itching, Exercise regularly, but not within 2 hours diagnosed with breast cancer, she is told to Exercise burning, and pain with intercourse. Methods of bedtime. stop taking her hormone therapy, especially Moderate exercise, such as walking or doing to reduce vaginal dryness include: if her breast cancer depended on estrogen to housework or yard work, for 30 minutes a Seek counseling to help you cope with grow. day can reduce hot flashes. Exercise can also Personal lubricants stress. be helpful in relieving stress, depression, and Vaginal moisturizers Talk with your doctor if you feel you need Hot Flashes fatigue and may even improve self-esteem. It medication for sleep. is important to note that excessive exercise Vaginal estrogen Hot flashes are the most common menopausal can actually increase the number of hot Lubricants are used to decrease friction and Mood Changes symptom experienced by breast cancer flashes. reduce discomfort during intercourse. It is A diagnosis of breast cancer can result in survivors. They often occur due to decreased best to use water-based lubricants such as K-Y feelings of grief and loss, guilt, and anxiety. levels of estrogen. Some women may have an Relaxation Personal Lubricant, Astroglide, Lubrin, Moist These feelings may be compounded by the increase in the number and severity of their Practicing relaxation techniques may reduce Again, or Slippery Stuff. side effects of chemotherapy, such as fatigue, hot flashes due to treatment with tamoxifen hot flashes. These techniques include deep nausea, and hair loss. Some women become Avoid using oil-based products such as or aromatase inhibitors. breathing, meditation, muscle relaxation, depressed while others have higher levels of petroleum jelly and baby oil. These can cause visualization, Qigong, and yoga. Other anxiety. Medications, relaxation techniques, During a hot flash, women may notice a irritation, damage condoms, and increase the feeling of warmth, flushing, sweating, and management techniques include positive support groups, and individual or group risk of vaginal infections. counseling are all helpful options. an increase in their pulse rate. Some women affirmation and aromatherapy. The aromas 38 39 Urinary Incontinence and Get enough exercise and sleep. Sexual Response How You Are Feeling Emotionally Urinary Tract Infections Drink plenty of water throughout the day. The normal sexual response includes four Getting the support you need, whether The lining of the bladder wall and the urethra through counseling, talking with family Avoid coffee, tea, soft drinks, and alcohol. phases: desire, excitement, orgasm, and can become thinner after menopause. resolution. Breast cancer treatment may have members, or through community groups, Avoid hot soapy showers and baths. These changes can cause increased urinary an effect on desire, excitement, and the ability can help your overall adjustment during incontinence or urinary tract infections. Use bath oil or heavy lotions on your skin to have an orgasm. your diagnosis and treatment, including after bathing. your feelings about your sexuality. To deal with incontinence: It is very common to not have your usual Avoid bladder irritants, such as coffee, tea, Use sunscreen, but be sure to take a level of interest in sex when going through a Checking into the facts about your and alcohol. vitamin D supplement, as sunscreens can stressful life event such as a cancer diagnosis. concerns can be very helpful. For example, block the absorption of vitamin D by the some women think estrogen levels are Avoid smoking. Libido, or the desire for sexual activity, is skin. affected by many things, both physical and increased during sexual activity, which Limit fluids to 64 ounces per day. emotional. As time goes on, you may wonder may increase the risk of cancer spreading. This is not true. Lose weight — obesity may increase what you can do to increase your interest in Sexuality incontinence. sexual activity. Seeking treatment if you feel you may have depression or anxiety benefits your Perform Kegel exercises. Sexuality can be defined as how we see How You Are Feeling Physically interest in and enjoyment of life and the ourselves as sexual beings. It is affected Have biofeedback treatments. Taking extra care of yourself — eating sexual aspect of it. by our mind, body, and spirit and can be well, controlling any side effects such as Empty your bladder on a schedule. influenced by our culture, religious beliefs, nausea, and staying active — can impact and relationships. You and Your Partner To reduce the risk of urinary tract infection: your well-being and libido. Just as each woman’s sexuality is her own, At times, you may be feeling the desire for Wipe from front to back. Getting the rest you need — through naps every woman is unique in her response to sex, but your partner may not be showing Wear cotton underwear. or at night as needed — is also key to your sexuality after being diagnosed with breast interest. You might assume that your partner overall feeling of well-being and your Change underwear daily. cancer. When first diagnosed, you may not doesn’t find you attractive, but it may be due libido. to a fear of hurting you during sexual activity Avoid tight pants, hot tubs, perfumed have any thoughts about sexuality. Your Using lubricants and moisturizers can or not wanting to put any demands on you at powders, and bubble baths. thoughts may be turning to things that affect your self-image, such as losing part or all of a help you feel more comfortable and this stressful time. Limit bladder irritants such as tea, coffee, breast or losing your hair. improve your response during sexual It is important for you and your partner to and alcohol. activity. See page 39 for information. Our society has placed an emphasis on discuss your feelings and concerns to avoid Drink cranberry juice to increase the women’s breasts. They can be seen as signs Talking to your doctor about your misunderstandings. It may be helpful to focus acidity of urine. of femininity, motherhood, or sexuality. concerns helps in learning all your on hand holding, hugging, kissing, massage, Urinate after intercourse. Each woman has her own feelings about her options. and other ways of feeling close. Take the breasts. A decrease in how often there is vaginal time to do the things that you enjoy doing Skin Changes together. No matter what type of surgery you have, penetration can lead to a decrease in the As women age, their skin becomes more dry there can certainly be an impact on your self- elasticity of the vagina. Sexual activity, When one person in a marriage or and flaky. There is also a loss of collagen, image. How you feel about yourself and how including self-stimulation, and the use of relationship is going through cancer which contributes to wrinkles. Sun exposure attractive you feel have a strong impact on vaginal dilators can help to maintain elasticity treatment, both people are dealing with it — can result in increased damage to the skin. sexuality. Taking time with your appearance and reduce discomfort during intercourse. with their own concerns and responding in To improve the health of your skin: in ways that you enjoy, such as clothes and There are products that can be applied to their own way. One person may want to talk makeup, can boost your self-image and have a the clitoris to enhance sexual response and about it a great deal while the other person Avoid smoking. positive impact on your sexuality. increase the chance of orgasm. may prefer to work out his or her feelings Avoid overexposure to sunlight. privately without talking much about it. Avoid stress. 40 41 How your relationship was before your Insurance companies provide different program called Together Rx Access. This Helping Your diagnosis influences how you and your amounts and types of coverage for breast program provides savings on more than 300 partner deal with it. There are times when the prostheses, bras, and wigs. Contact your medications. Medicare recipients may also be Children Cope diagnosis of breast cancer can strengthen a insurance company before purchasing any eligible for assistance in obtaining prescription relationship. If there are problems within the of these items to find out what costs will be coverage at a reduced rate. Call the Ohio You may have concerns about how to help relationship already, those problems may be covered and to locate preferred providers. Department of Insurance, Ohio Senior your children cope with your diagnosis and Health Insurance Information Program treatment — what to tell them and where to worsened by the diagnosis and treatment. In Medicare currently covers breast prostheses (OSHIIP) 1-800-686-1578 get support. Answers to these questions will these cases, therapy for both partners may be and a reasonable number of bras at 80% of a at for more helpful. information. depend on the ages of your children. Each predetermined allowable amount. There is no child is unique in how he or she will respond Concerns for Single Women Medicare coverage for wigs. If you have a low income and are uninsured, to your cancer. PrescriptionEase Medicaid also provides coverage for check with the Not every woman who is diagnosed with (Medication Assistance Program) Even very young children are aware when reasonable and necessary breast prostheses, at breast cancer has a partner. Single women 614-546-4224 something has changed within the family, bras, and wigs. All of these items require Mount Carmel. Call for more have special concerns. You may often information. and they know when their parents are upset. wonder if someone will see you as desirable “preauthorization” from Medicaid. It is Do not pretend that nothing is happening. after a diagnosis and the loss of one or both important to obtain this approval before Lymphedema therapy can be very costly and Doing so only increases anxiety and teaches breasts. It can be difficult as you begin new purchasing any of these items. should be covered by all payers according to that secrets are okay. When children sense relationships to know when to share your If you are having difficulty affording a the Women’s Health and Cancer Rights Act. that something is wrong but are not given experience with the new person in your life. prosthesis, bra, or wig, community resources Contact your Breast Oncology Nurse Navigator a reason, they tend to imagine or make up Some women may view their experience as may offer help. The Columbus Cancer if you need lymphedema therapy but are reasons, even blaming themselves. Although a test in a new relationship to see how the Clinic is one of these resources. Call unable to afford it. young children can’t understand and don’t person reacts as they share their story. You 614-263-5006 for more information. The If you feel you may be eligible for state or need to know details of your diagnosis and may find counseling to be helpful regarding American Cancer Society can also assist federal benefits, like Medicaid, please visit treatment, they do need basic explanations these concerns. you with locating a variety of resources. Call www.jfs.ohio.gov to inquire about food, about why things may be changing. They also 1-800-227-2345 for more information. cash, or medical assistance. Please visit need to hear that these changes are not their www.ssa.gov fault. Your Mount Carmel Breast Oncology Nurse to inquire about Social Security Finances Navigator may be able to help you obtain a and disability benefits. If you need assistance Older children need information geared wig if you are unable to afford one. in accessing the Internet, please ask your nurse to their level of understanding — honest The diagnosis of breast cancer may have a navigator or social worker for help. information about your diagnosis and future Drug companies may also help women who financial impact. The costs of diagnosis and health. They need to feel it’s okay for them have financial concerns. They are often able If you find you are not eligible for Medicaid treatment can be high. Even the cost of a to ask questions and to bring up the subject. to supply certain medications to patients who or Medicare, and you do not have access to prosthesis, special bra, or wig can often be Even in normal times, communicating with are in need. You can visit www.needymeds. employer-sponsored health insurance, please more than a woman can afford. www.healthcare.gov teenagers can be a challenge. When talking com and enter the brand or generic name of visit to check for plans The federal Women’s Health and Cancer with your teen about your diagnosis, share your prescription drug for more information. available through the Affordable Care Act. Rights Act, enacted in 1998, requires coverage information with truthful reassurance. Avoid You can review drug company program of certain costs. Insurance companies, HMOs, the common mistake of asking your teen to eligibility requirements and obtain an and other health plans must cover some costs take on too much extra responsibility in the application for assistance directly from this of certain needs of women with breast cancer. home or with their younger siblings. Try site. If you qualify, please speak with your not to rely too heavily on your teenagers for All insurance companies and payers will doctor or nurse navigator about completing emotional support that you really need to require a doctor’s prescription for breast the paperwork. prostheses, bras, wigs, and lymphedema receive from other adults. If you are on Medicare, have a low income, treatment before you purchase any of these and have no prescription drug coverage, items or begin treatments. you may qualify for a prescription savings 42 43 Talking with Your Children Anger Support Resources The following tips may help you talk to your Anger can also take on many forms: anger children about your cancer: at you for getting cancer, anger at the cancer for attacking you, anger at what this event is Explain information in simple terms. doing to their life now and what it might do National Organizations Avoid too many details. to them in the future. Sometimes children Listed below are contact numbers for national “Hope is the thing with feathers will act out and become more demanding and Try not to discuss heavy topics before organizations that may interest you. that perches in the soul, and sings important activities or bedtime. unruly. They may not do as well in school or may do things they would not normally do. American Cancer Society the tune without the words, and Ask your children what support they think 800-227-2345 never stops at all.” they will need. Let them know your plans Encourage children to express their thoughts — EMILY DICKINSON for helping them during this time. and feelings. Try not to respond to their Breast Cancer Network of Strength acting out with anger. Help them to redirect 800-222-2141 (English or Spanish) Allow your children to express their their anger in more healthy ways. Sometimes feelings. Be willing to share some of your Cancer Information Services physical activity can help defuse anger. feelings, but don’t rely on them as your (National Cancer Institute) Websites 800-4-CANCER sole support. Sadness Finding health information on the Internet Email: [email protected] Be patient. Children often need to repeat Because you may be crying more often, can be easy, but finding reliable information questions to be reassured. younger children may think they are causing National Breast Cancer Coalition takes a little more time and care. Not 202-296-7477 everything on the Internet has been reviewed Avoid using clichés such as “Be the man of you to be sad. Tell them you are sad because and evaluated. the house” or “Be brave.” of your illness, but be sure they know that National Lymphedema Network they did not make you sad. 800-541-3259 When using websites, check how current Tell your children that you will try to keep Email: [email protected] the information is, and if the authors or things as normal as possible in their daily At times older children may share in your sponsoring organizations are noted and well routine. Allow them to make decisions sadness or grief and openly cry with you. Reach to Recovery — Often they will not. Some will try to be American Cancer Society known. Also be aware of the sponsors and any about things that directly affect them if potential for biases. possible. cheerful when around you, but express their 800-227-2345 sadness when they are alone or with friends. SHARE: Self-Help for Women with You may find many of these websites helpful: Others will not appear to express any sadness Breast or Ovarian Cancer African American Breast Cancer Alliance Common Issues or emotion. It may be too overwhelming for 866-891-2392 — an advocacy group for women with You may need to address some of the them to handle and they will appear to ignore breast cancer and their families. Provides following issues with your children. it. Sisters Network Inc. (A National African American Breast educational and emotional support. Fear and Worries Although children may have different Cancer Survivorship Organization) www.aabcainc.org reactions to learning that their parent 713-781-0255 or 866-781-1808 American Cancer Society — information Fear can take many forms: fear that they has cancer, it is better to tell them than to about cancer and local resources. caused the cancer, fear that they will “catch” pretend nothing has changed. It is important Susan G. Komen www.cancer.org cancer, fear that their life will change, and fear to provide children with the amount of Breast Cancer Network of their parent dying. information that they want or need, at a level 877-465-6636 Avon Foundation Breast Center Children often do not share their fears or that they can understand. at Johns Hopkins www.hopkinsbreastcenter.org worries. Listen to children’s play to learn There are no perfect answers or responses about their concerns. Help them to cope by when you help your children deal with your Black Women’s Health Imperative addressing their concerns and by reassuring illness. Your relationship with your children (BWHI) — promotes black women’s them. Keep them involved in their normal is key. Try to provide more family time and physical, emotional and spiritual wellness activities. This can help them work through do things together. through community events and education. their feelings. www.blackwomenshealth.org 44 45 BreastCancer.org LIVESTRONG Foundation — Patient Advocate Foundation — national Chicken Soup for the Soul: Hope and www.breastcancer.org LiveSTRONG works to empower the nonprofit organization that seeks to Healing for Your Breast Cancer Journey: CancerCare — provides free professional cancer community to address the unmet safeguard patients. Surviving and Thriving during and after support services for anyone affected by needs of cancer survivors. www.patientadvocate.org Your Diagnosis and Treatment, Julie Silver cancer. www.livestrong.org Susan G. Komen for the Cure (2012) www.cancercare.org Locks of Love — a nonprofit organization ww5.komen.org Diagnosis: Breast Cancer: The Best Action Spanish version also available. that provides hairpieces to financially Spanish interpretation available on site. Plan for Navigating Your Journey, Cara disadvantaged children using donated Novy-Benniwitz (2012) www.cancercare.org/espanol Dr. Susan Love Research Foundation hair. Explains how to donate your own Cancer Hope Network — provides free, www.drsusanloveresearch.org Dr. Susan Love’s Breast Book, hair. 6th edition, Susan Love, with Karen confidential, one-on-one Young Survival Coalition — directed to www.locksoflove.org Lindsey and Elizabeth Love (2015) support to people with cancer young women with breast cancer. Look Good Feel Better — for women in and their families. www.youngsurvival.org The Breast Cancer Survival Manual: A www.cancerhopenetwork.org cancer treatment. Step-by-Step Guide for the Woman with www.lookgoodfeelbetter.org Cancer.Net — Trusted, compassionate Newly Diagnosed Breast Cancer, National Breast Cancer Coalition — information for people with cancer and Books 5th edition, John Link (2012) grassroots advocacy in action. their families and caregivers, from the Your Breast Cancer Treatment Handbook: www.breastcancerdeadline2020.org These and many other books are available in American Society of Clinical Oncology. Your Guide to Understanding the Disease, libraries and bookstores. www.cancer.net National Cancer Institute — information Treatments, Emotions and Recovery from about cancer and clinical trials. Be a Survivor: Your Guide to Breast Cancer CenterWatch — Breast Cancer, Judy Kneece (2012) www.cancer.gov Treatment, 6th edition, Vladimir Lange Clinical Trials Listings Service 100 Questions and Answers about Life after (2015) www.centerwatch.com Spanish version also available. Breast Cancer — Sensuality, Sexuality, www.cancer.gov/espanol Breast Cancer Clear & Simple, Second FORCE: Facing Our Risk of Cancer Intimacy, Michael Krychman, Susan Edition: All Your Questions Answered, Empowered — for women with increased National Comprehensive Cancer Network Kellogg Spadt, and Sandra Finestone American Cancer Society (2016). risk of cancer due to family history or (NCCN) — guidelines to the latest (2010) genetic status. advances in cancer care. These guidelines Breast Cancer Journey: The Essential Guide 100 Questions and Answers about www.facingourrisk.org are the recognized standards for cancer to Treatment and Recovery, 3rd Edition, Advanced and Metastatic Breast Cancer, treatment. Ruth O’Regan, MD; Sheryl G. A. Gabram, Imaginis — The Women’s Resource 2nd edition, Lillie Schockney and Gary https://www.nccn.org/patients/guidelines/ MD, MBA, FACS; Terri Ades, DNP, FNP- www.imaginis.com Shapiro (2011) cancers.aspx BC, AOCN; Rick Alteri, MD; Joan Kramer, Inflammatory Breast Cancer National Lymphedema Network — MD; Kimberly A. Stump-Sutiff, MSN, RN, Support — offers information about IBC international nonprofit organization AOCNS (2013). and a mailing list for communicating with that provides education and guidance others who have IBC. to lymphedema patients and healthcare www.ibcsupport.org professionals. International Cancer Alliance for www.lymphnet.org Research and Education — patient cancer NeedyMeds — information on assistance information and hope. programs that help with the cost of www.icare.org medicine. Living Beyond Breast Cancer — nonprofit www.needymeds.org organization dedicated to empowering all The North American Menopause Society women affected by breast cancer. (NAMS) www.lbbc.org www.menopause.org 46 47 Glossary Bilateral: Occurring on both sides of the Carcinoma: A malignant tumor that begins Fibrocystic changes: Benign changes body. in the lining layer (epithelial cells) of organs. involving breast swelling or pain in the breast; Adenocarcinoma: Cancer that starts in Biopsy: A procedure in which tissue samples At least 80% of all cancers are carcinomas, also called fibrocystic disease. and almost all breast cancers are carcinomas. glandular tissue, such as the lobules or ducts are removed from the body to be examined Fine needle aspiration: A type of biopsy of the breast. under a microscope. A biopsy can be done CT (computed tomography) scan: An that may be used on lumps that can be felt. Adenoma: A benign (not cancerous) growth with a needle or by surgery. imaging procedure in which multiple X-rays A needle is inserted into the lump to remove are taken of a part of the body for pictures of that starts in glandular tissues. Bone scan: An imaging method that reveals cells or fluid from the lump. It is done in an cross-sections of internal organs. outpatient setting or in a doctor’s office. Adjuvant therapy: Treatment used to important information on the growth and improve how well primary therapy works, health of bones, including the location of Core needle biopsy: Type of biopsy that Frozen section: Microscopic examination such as hormone therapy, chemotherapy, cancer that may have spread to the bones. may be done if a lump has been found. A of a specimen of tissue that has been quick- special needle is used to remove tissue from or postsurgery radiation. It can increase the BRCA1, BRCA2: Genes that, when damaged frozen. This method gives a quick diagnosis, the lump. Ultrasound may be used to help chance of curing the disease or keeping it (mutated), increase the chance of a woman sometimes while the surgeon is waiting to locate the lump. This biopsy is done in an from spreading. developing breast and/or ovarian cancer, complete a procedure. outpatient setting or in a doctor’s office. Adrenal gland: Gland that produces compared to women who do not have the Hormone: A chemical substance released Cyst: hormones that regulate metabolism and mutated gene. A fluid-filled mass that is usually into the body by the endocrine glands, such as benign. control fluid balance and blood pressure. This Breast-conserving surgery: Surgery to the thyroid, adrenal, or ovaries. gland also produces small amounts of male remove a breast cancer and a small amount Dimpling: A pucker or indentation of the Hormone replacement therapy: Another hormones (androgens) and female hormones of benign tissue around the cancer, without skin; on the breast, it may be a sign of cancer. term for estrogen replacement therapy. (estrogens and progesterone). One adrenal removing any other part of the breast. DNA: Abbreviation for deoxyribonucleic Human epidermal growth factor gland is located near each kidney. Breast implant: A manufactured sac that is acid. DNA holds genetic information on cell receptor 2 (HER2): A protein on the edge Alopecia: Hair loss that can occur because of filed with silicone gel (a synthetic material) or growth, division, and function. of a cell that sends signals for the cell to grow. chemotherapy or radiotherapy to the head. saline (sterile saltwater). The sac is surgically Duct: A hollow passage for gland secretions. Hyperplasia: An abnormal increase in the Antibody: A protein in the blood that inserted to increase breast size or restore the In the breast, a passage through which milk number of cells in a specific area, such as the defends against invading foreign agents such shape of a breast after mastectomy. passes from the lobule (which makes the lining of the breast ducts or the lobules. as bacteria. Breast reconstruction: milk) to the nipple. Surgery that Invasive ductal carcinoma: A cancer Ductal carcinoma in situ (DCIS): Anti-estrogen: A substance that blocks the rebuilds the breast shape after mastectomy. A highly that starts in the milk passages (ducts) of the effects of estrogen on tumors. A breast implant or the woman’s own tissue curable breast cancer that starts in the milk breast and then breaks through the duct wall, provides the shape. passages (ducts) and has not penetrated the Areola: The dark area of flesh that surrounds where it invades the fatty tissue of the breast. Breast self-exam (BSE): duct walls into the surrounding tissue. the nipple of the breast. A technique Invasive lobular cancer: A cancer that of checking one’s own breast for lumps or Edema: Buildup of fluid in the tissues, Asymptomatic: To be without obvious signs starts in the milk-producing glands (called the suspicious changes. resulting in swelling. of disease. Many cancers can develop and lobules of the breast) and then breaks through grow without producing symptoms. Calcifications: Tiny calcium deposits within Endocrine glands: Glands that release the lobule walls to involve adjacent fatty the breast, alone or in clusters, often found by hormones into the bloodstream. The ovaries tissue. Atypical: Abnormal; not usual. are one type of endocrine gland. mammography. Lobular carcinoma in situ (LCIS): A very Axillary dissection: A surgical procedure in Capsule formation: Scar tissue that may Estrogen: A female sex hormone produced early type of breast cancer that develops in which the lymph nodes in the armpit (axillary form around a breast (or other) implant as the mainly by the ovaries, and in smaller amounts the lobules that produce milk in the breast nodes) are removed and examined. body reacts to the foreign object. Sometimes by the adrenal glands. and does not penetrate through the wall of the Benign: Not cancerous; not malignant. The called a contracture. Fibroadenoma: A type of benign breast lobules. main types of benign breast problems are Carcinogen: Any substance that causes tumor composed of fibrous tissue and fibroadenomas and fibrocystic changes. cancer or helps cancer grow. glandular tissue that usually occurs in younger women. 48 49 Lumpectomy: Surgery to remove the breast Neoadjuvant treatment: A treatment Prophylactic mastectomy: Surgery that Stereotactic breast biopsy: A type of tumor and a small amount of surrounding given as a first step to shrink a tumor before removes the breast tissue beneath the skin core needle biopsy that may be used to check normal tissue. the main treatment, which is usually surgery. before any evidence of cancer can be found a very small area seen on a mammogram or for the purpose of preventing cancer. Lymph: Clear fluid that passes within the Examples of neoadjuvant therapy include an area that cannot be felt. The doctor will lymphatic system and contains cells known chemotherapy, radiation therapy, and Prosthesis: An artificial form — a breast do this biopsy using a special needle and as lymphocytes. These cells are important hormone therapy. prosthesis can be worn under the clothing the guidance of a computer in an outpatient for fighting infection and may also help fight Nipple discharge: Any fluid coming from after a mastectomy. setting. cancer. the nipple. It may be clear, milky, bloody, tan, Recurrence: Cancer that has come back Volume displacement: A method to shift Lymphedema: Swelling in the arm caused gray, or green. after treatment. Local recurrence is at the breast tissue during an operation to fill a gap. by excess fluid that collects after lymph nodes Nodal status: Indicates whether a breast same site as the original cancer. Regional Wire localization: A procedure used to and vessels are removed by surgery or treated cancer has spread (node-positive) or not recurrence is in the lymph nodes near the site guide a surgical breast biopsy when the lump of origin. Distant recurrence is in organs or by radiation. spread (node-negative) to lymph nodes in the is difficult to locate or in areas that look tissues farther from the original site than the armpit (axillary nodes). suspicious on the X-rays but do not have a Magnetic resonance imaging (MRI): A regional lymph nodes (such as the lungs, liver, distinct lump. method that allows cross-sectional images of Nodule: A small, solid lump that can be bone marrow, or brain). Metastasis means the inside of the body to be viewed. MRI uses located by touch. that the disease has recurred at a distant site. a powerful magnet and transmits radio waves Oophorectomy: Surgery to remove the Remission: Complete or partial through the body. ovaries. disappearance of signs and symptoms of Malignancy: A mass of cancer cells that Ovary: Reproductive organ in the female cancer in response to treatment; the period may invade surrounding tissue or spread pelvis. Normally a woman has two ovaries during which a disease is under control. A (metastasize) to distant areas of the body. that contain eggs and are the primary source remission may not be a cure. Mastitis: Inflammation or infection of the of estrogen. Risk factor: Anything that increases a breast. Paget’s disease of the nipple: A rare person’s chance of getting a disease such as Medullary carcinoma: A type of infiltrating form of breast cancer that begins in the milk cancer. ductal carcinoma with especially sharp passages (ducts) and spreads to the skin of the Sarcoma: A malignant tumor growing boundaries between tumor tissue and normal nipple and areola. from connective tissues such as cartilage, fat, tissue. Partial mastectomy: A surgery to remove muscle, or bone. only the part of the breast in which the cancer Metastasis: The spread of cancer cells Sentinel node biopsy: Surgical procedure is present and a margin of healthy breast to distant areas of the body by way of the that investigates whether a cancerous area tissue. lymphatic system or bloodstream. of the breast has drained to the next lymph Precancerous: Abnormal changes in cells Multicentric breast cancer: Breast cancer nodes in the chain. The first lymph node is that may become cancer. occurring in multiple areas of a breast. called the “sentinel node.” Primary cancer: The site where cancer Staging: Needle aspiration: Removal of fluid from a The process of determining and begins. Primary cancer is usually named after describing the extent of cancer. Staging cyst or cells from a tumor using a needle and the organ in which it starts. syringe. of breast cancer is based on the size of the Progesterone: A female sex hormone tumor, whether regional axillary lymph nodes Needle biopsy: Removal by needle of fluid, released by the ovaries to prepare the uterus are involved, and whether distant spread cells, or tissues for examination under a for pregnancy and the breasts for milk (metastasis) has occurred. microscope. production. Needle localization: A procedure used to Prognosis: A prediction of the course of guide a surgical breast biopsy when the lump disease; the outlook for the cure of the patient. is difficult to locate. 50 51 Notes ______
52 January 2020