Information for Patients with Breast Cancer and Their Caregivers. Patient Education Booklet

Transcription

1 Information for Patients with Breast Cancer and Their Caregivers Patient Education Booklet

2 inside front cover (blank)

3 table of contents INTRODUCTION i KEY POINTS TO REMEMBER WHEN BATTLING BREAST CANCER ii A DIAGNOSIS OF BREAST CANCER When the Diagnosis is Cancer An Overview Provides an overview of the treatment process after diagnosis Prognostic Factors Provides a guide to factors that determine a patient s chances for surviving breast cancer Coping with a Cancer Diagnosis Presents an overview of the emotional aspects of a breast cancer diagnosis TREATMENT Making Treatment Decisions Presents important steps to help you make treatment decisions Treatment Choices An Overview Describes different treatments for breast cancer, along with tips for making treatment decisions Diet & Nutrition during Treatment Provides important nutrition recommendations during breast cancer treatment and recovery Clinical Trials Describes the process through which drugs and treatments enter clinical trials and how one joins a clinical research trial Breast Surgery Presents types of breast cancer surgery and discusses the side effects from surgery Radiation Therapy Discusses all aspects of radiation therapy, including the different types Chemotherapy Discusses all aspects of chemotherapy, including the types and side effects Life After Treatment Describes the emotional and physical effects of treatment Follow-Up Describes the next steps to expect after breast cancer treatment is stopped SUPPORT ISSUES Getting the Support You Need Discusses how to get the social support you need Talking with your Doctor Describes how to communicate more effectively with health care providers

4 Talking with your Partner Discusses how to talk to your partner about your diagnosis of breast cancer Sexuality & Intimacy Discusses issues related to sexuality and intimacy for breast cancer patients Talking with your Children Discusses how to talk to your children about your diagnosis of breast cancer End-of-Life Care Discusses palliative care, hospice, and quality of life after treatment is stopped SPECIAL POPULATIONS & BREAST CANCER Racial & Ethnic Differences Describes differences in screening and detection between racial and ethnic groups Young Women & Breast Cancer Provides an overview of breast cancer in young women RESOURCES & MEDICAL INFORMATION ON BREAST CANCER Breast Cancer Facts Presents what is currently known about breast cancer What is Breast Cancer? Describes and explains the process of normal cells turning into cancer cells Types of Breast Cancer Discusses the process of growth and the spread of breast cancer Medical Vocabulary Provides a guide to frequently used breast cancer terms Breast Health Resources Provides a listing of places and ways to find more information on breast cancer Additional Resources The BCBSGa Resources for Patients with Breast Cancer and Their Caregivers

5 Introduction Blue Cross Blue Shield of Georgia (BCBSGa) has prepared this booklet to assist patients like you with breast cancer understand and cope with their disease. Included you will find a collection of materials that explain: Some key point to remember when battling breast cancer. Your rights and how to take control. How breast cancer is diagnosed. Treatment options. The treatment you select is a serious decision. You should thoroughly understand your options and discuss it with your doctor. Support issues. Cancer is a difficult diagnosis to deal with. Support issues are included to help you and your family through these difficult times. Special populations and how cancer can affect people differently. The basic anatomy of the breast and breast cancer. Resources are offered for more information, and to explain medical terms. i

6 Key Points to Remember when Battling Breast Cancer 1 Your Rights Diagnosing Breast Cancer After the Diagnosis Treatment Recovery Support and Resources There is life after breast cancer! It is not a death sentence. Knowing about your treatment options and talking openly with your doctors will help you through this difficult experience. We hope that this summary and the information in this booklet will help you through this process. Always remember that your doctor is available to answer your questions. Your Rights When told they have breast cancer, many women feel they have lost control of their lives. Others feel overwhelmed by all the decisions they have to make. These feelings are normal, but do not let them keep you from taking action. First, learn about breast cancer. Get information about treatment options, treatment side effects, and clinical trials. Remember, doctors can make recommendations, but you and your doctor must make decisions together. Get the right treatment and finish it the first time around. Coping with breast cancer requires expression of emotion, a fighting spirit and support. Make time to share your feelings with others. A social worker or counselor can also help. They can teach you ways to manage your issues about breast cancer and how to cope with your feelings. Your doctors should not judge you and should respect you. You must be comfortable with them so you can work successfully together for your survival. 1 These key messages were compiled from the following sources: Blue Cross Blue Shield of Georgia - Breast Cancer Treatment Physician Advisory Panel Blue Cross Blue Shield of Georgia - Layperson Breast Cancer Advisory Panel American Cancer Society - National Breast Cancer Coalition Fund - How to Get Good Care for Breast Cancer 2003 at Pfizer Oncology booklet - You are in Charge 2004 Pfizer Inc. Susan G. Komen Foundation - Fact Sheets 2004 at Blue Cross of California - Breast Cancer Resource List Take time to talk honestly with your doctor to gain trust and confidence. It will help you work together as a team to make important treatment decisions in the future. If you don t understand what they tell you, ask them to explain it again. Keep asking until it is clear to you. Take notes if it will help you remember later. Ask the doctor or nurse to write down important instructions. If something just doesn t seem right, ask the doctor or nurse about it before allowing them to continue. If you are not comfortable with your doctor, or their recommendations you have the right to a second opinion. If you have breast cancer surgery you have the right to have a prosthesis or reconstructive surgery. Your doctor can advise you about this. During treatment, you may have some pain that can be treated. Nausea is a common side effect of chemotherapy. There are many different medicines your doctor can provide to help relieve pain and nausea. It is important to talk with your doctor about what type of pain you feel, where you feel it, what helps ease the pain, and how your current pain medication helps. ii

7 Diagnosing Breast Cancer When a breast mass is found your doctor will usually recommend a biopsy to find out what type of mass you have. A biopsy identifies the type of mass, the extent of the mass and whether it has spread to other parts of the body. This analysis is called a pathology report. You should obtain a copy of your pathology report and take it with you when you visit your doctors. Some masses are benign. Benign masses are not a problem, and nothing needs to be done about them. But when the biopsy shows that a mass is malignant or cancerous, the doctor will discuss your treatment options with you. After the Diagnosis You have time to get the information you need and make the right decision. Take some time to learn all you can about your type of breast cancer and your treatment options. Stay focused on getting the right treatment and finishing it the first time around. Your breast cancer took some time to develop and it is not going to get worse overnight. Your treatment team should include a cancer surgeon, a medical cancer specialist (an oncologist) and a radiation oncologist. Sometimes additional specialists will be a part of your team. It is very important that you understand all of your treatment options. Good information lets you make the best decision for your care and survival. You might also consider getting a second opinion about your treatment options. The Americans with Disabilities Act (ADA) applies to any company with more than 15 employees. It gives special rights to workers who have cancer. Under this law your company must help you in a number of ways. One is letting you get cancer treatments during your workday. To learn more, talk to the human resources person at your company. Or contact the social worker on your health care team. It is against the law for your employer to fire you because you have breast cancer. Your job may be protected under the Family and Medical Leave Act (FMLA) of 1993, which allows you to take 12 weeks off work without pay and keep any health insurance benefits your job offers. To find out if the FMLA applies to you, call the Women s Bureau in the U.S. Department of Labor at Most women who undergo therapy for breast cancer are able to continue working. Treatment The goal of any treatment for breast cancer is to offer the best possible chance of recovery. Your treatment can include one or more of the following options: surgery, radiation therapy, chemotherapy, hormone therapy, and biological therapy. Most cancer specialists agree that combining several treatments gives you the best chance of survival. In other words, thorough and complete treatment has better results than just a single method of treatment with a wait-and-see approach. Usually a cancerous mass will need to be removed by surgery. But a total mastectomy or removal of the entire breast is not always necessary. It is often possible to remove only the mass and the area immediately around it (clear of cancer margins).

8 We are your partners in health care, and we want to help. We hope you will find the enclosed information helpful. We encourage you to discuss any questions you may have with your doctors. You may also call our 24-hour nurse advice line, BlueChoice On-Call at (888) 724-BLUE [ ]. Radiation is very effective in killing fast growing cells like breast cancer. Sometimes radiation is given before surgery to shrink tumor cells. But most often it s given after surgery to stop the growth of any cancer cells that may remain. This reduces the chance of cancer returning (recurrence). When radiation is given after a lumpectomy, the chance of recurrence is reduced to about 10%. Chemotherapy is the use of anti-cancer drugs to treat cancer. It can be used to stop the growth of cancer and can kill cancer cells that have spread to other parts of the body. It is given before surgery or after surgery to reduce the risk of breast cancer returning. You should talk with your doctor about clinical trials. Clinical trials study treatments that have already shown good results through a series of staged tests and are in the final stages of testing before full approval. Clinical trials can offer advanced treatment that would not otherwise be available. Your oncologist will discuss this with you and recommend those that might be suitable for you. Recovery After surgery and treatment you can choose to have surgery to make the breast look and feel more natural. Your insurance covers reconstructive surgery after breast cancer surgery. Your doctor will be glad to discuss this with you. Drugs are available to reduce the chance of breast cancer coming back. Tamoxifen is just one of these drugs. Ongoing screening with mammograms and clinical breast exams are necessary to watch for recurrence of cancer. Support and Resources It is important to understand your treatment options and make informed decisions. But that is just one aspect of your health care. Stress, anxiety and depression are common among cancer patients. You, your family or other members of your support team may experience symptoms of stress, which can interfere with your ability to cope. Strong social support systems, like those provided by a support group are a way to care for your emotional and spiritual needs. The good news is that help is out there. Sometimes you may need some additional assistance with specific practical tasks like rides to appointments, help with cooking or cleaning, or someone to go with you to a doctor s appointment. People will feel good, even honored, that you count on them to help you through this difficult time in your life. Take a look at the BCBSGa Resource List for Breast Cancer Patients and Their Caregivers for more information.

9 when the diagnosis is cancer an overview STEP 1: Planning your journey Your doctor reviewed your pathology report and made a diagnosis of breast cancer. The same report will be used to determine your prognosis (chances of recovery from breast cancer) and to suggest a course of treatment. Making this plan is the first step in the process of healing. You can get copies of all your medical records, including your pathology report. You may want to look at these records with your doctor so that he or she can translate the technical information for you. Your medical records will also be helpful in case you seek a second opinion. This will help you become a more educated consumer and patient. After all, you will make the final decisions about what is best for you. Anyone who has ever had cancer remembers what it felt like hearing the diagnosis for the first time. You can feel angry, afraid, cheated, overwhelmed and uncertain about the future. But in time you learn you can take control of your life. Your medical team, family and friends can help you through the process. STEP 2: Making treatment decisions Today doctors have many treatment options to offer you. There are two main types of breast cancer treatment: local and systemic. Local treatment includes procedures involving only the breast and surrounding tissue. These include surgery and radiation therapy. Surgeries can be breast conserving, such as lumpectomy and axillary (under the arm) lymph node removal, or can remove the breast, called a mastectomy. Systemic treatment is a type of treatment that reaches cancer cells that are throughout the body. It includes treatments like chemotherapy, hormone therapy and biologic therapy. Local and systemic treatments are often used together to provide the best chance for recovery. For women who choose to have a mastectomy, breast reconstruction is another option. This surgery may be done at the same time as the mastectomy or afterwards. For some women, having reconstructive surgery helps them feel good about themselves and improves their emotional health. Be sure you talk to your doctors, family members and other patients who have had this procedure before you make your final decision. Your doctor may suggest several treatment options based on your type of cancer. Consider each option carefully. Do not rush into a decision if you are still not sure. Ask questions. Discuss your concerns. Consider your priorities. The more information you have, the more likely you will make an informed decision. STEP 3: Knowing what to expect Once you have made your treatment decision, but before you actually begin, find out what you can expect during treatment. For example, you will probably have blood tests and a chest X-ray before having surgery. 1

10 Resources Many larger hospitals have or can refer you to cancer programs or support groups in your area. Or you can contact these organizations for more information: The Susan G. Komen Breast Cancer Foundation I M AWARE American Cancer Society ACS National Cancer Institute s Cancer Information Service CANCER Y-ME National Breast Cancer Organization (English) or (Spanish) CancerCare HOPE Also, most treatments have some side effects. For every treatment that your doctor recommends, ask what side effects are common, how long they will last and what can be done to prevent or treat these side effects. Many medications are now available that can help relieve side effects from treatment. Remember that most side effects go away after the treatment ends. STEP 4: Dealing with treatment Depending on the type, treatment can last from several months to 5 years (hormone therapy). During this time, your medical team will keep you busy with doctor s visits, exams, medications and lab tests. Remember to take time to take care of yourself during treatment. Eat well and get plenty of sleep. Join a support group to talk to others who are going through the same treatment you are. A program called Look Good Feel Better SM teaches beauty techniques for those in cancer treatment. Contact the American Cancer Society to find out more about this program. During treatment, you may also have some pain which can be treated. There are many different medicines your doctor can provide to help relieve the pain. It is important to talk with your doctor about what type of pain you feel, where you feel it, what helps ease the pain and how your current pain medication helps. Nausea is a common side effect of chemotherapy. Today, however, nausea and vomiting can be successfully treated with anti-nausea drugs. Sometimes the drugs are given before the chemotherapy to prevent nausea from occurring at all. If you have any questions or are concerned about nausea, talk to your doctor. Cancer-related fatigue varies from patient to patient. Discussing symptoms with your doctor is the first step in relieving fatigue. Your doctor may suggest keeping a fatigue diary, planning activities for times when your energy level is highest, taking short naps and breaks, aerobic exercise to prevent fatigue and eating small meals or snacks. A support group may be helpful during this time as well. After your treatment ends, focus your energies on beginning the physical, emotional and spiritual course of healing. Keep all your follow-up appointments, and maintain open communication with your doctor. Related fact sheets in this series: treatment choices an overview making treatment decisions talking with your doctor 2 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

11 prognostic factors What do my reports show? Breast tissue that is removed during a biopsy is studied under a microscope by a pathologist (a doctor who specializes in looking at tissue). Your pathology report shows whether or not you have cancer and, if so, what type of cancer you have. If you have cancer, your pathology report will describe several characteristics of your cancer. Ask for copies of your reports and keep them for your records. Some of the most important items you may find on your reports are described in this fact sheet. Type of Breast Cancer There are several types of breast cancer. The name of the cancer is based on the origin and characteristics of the tumor. Ductal carcinoma arises in the breast ducts. Lobular carcinoma arises in the breast lobules. Paget s disease starts in the nipple. Typically, these cancers are said to be either in situ [in SY-too] or invasive. Carcinoma in situ stays in place where it started. It has not invaded into surrounding breast tissue, nor has it spread to other parts of the body, and it is very curable. However, if not treated, it can lead to invasive cancer which could metastasize (spread) and become lifethreatening. In situ cancers are often called pre-cancerous conditions. Invasive cancer spreads from the original place where it started and grows into the nearby tissue. There are also other types of breast cancer that are more rare. They are inflammatory, medullary, mucinous and tubular. Size and Spread Doctors use a rating scale to describe the seriousness of each case of breast cancer. The scale includes five stages: 0, I, II, III and IV. The higher the stage, the more extensive and serious the cancer. The stage depends on: the size of the tumor whether the cancer has spread to the axillary lymph nodes (glands in the underarm) signs of metastasis (the cancer spreading to other parts of the body) Your report may state the size, pattern and other features of the cancer. You will find out the stage of your cancer after surgery when your doctor is able to check whether cancer was found in your lymph nodes. What is a prognosis? A prognosis is a prediction. It is a doctor s best estimate of the chance that a woman will live free of breast cancer. In determining prognosis, doctors consider how well other patients with a similar type and stage of breast cancer have done when receiving the same treatment. However, because each patient is different, your doctor cannot say for certain what will happen to you. Some factors your doctor will consider when determining your prognosis are: characteristics of your cancer (for example, the type and stage) your age whether you have gone through menopause your general health how well treatment might work Hormone Receptor Status Sometimes breast cancer cells have receptors for hormones and sometimes they do not. Receptors are the parts of a cancer cell that allow a hormone 3

12 Resources Dr. Susan Love s Breast Book, 3rd edition, by Susan M. Love with Karen Lindsey (Addison-Wesley). Chapter 20, How to Interpret a Biopsy Report; and Chapter 21. Mayo Clinic Guide to Women s Cancers by Lynn C. Hartmann and Charles L. Loprinzi, 2005 (Mayo Clinic Health Information). The National Cancer Institute s Cancer Information Service a nationwide service for cancer patients and their families and friends, the public, and health care professionals that provides cancer information, local resources and services CANCER to attach and activate the cell. Breast cancer cells can have receptors for the hormones estrogen and progesterone together, or for either hormone alone. When this is the case, the cancer is called estrogen receptor (ER) and/or progesterone receptor (PR) positive. Women with a receptor positive cancer have a somewhat better prognosis than those without. A doctor can treat ER positive cancers with antiestrogen drugs. Histologic Grade Histologic grades are measures of how abnormal the cells from a tumor look under a microscope. The more the cells have changed to appear cancerous, and not like normal breast cells (histology), and the greater the percentage of the cells that are dividing, the more dangerous the cancer is likely to be. Tumors are given a histologic grade of 1 to 3. Grade 1 has the best prognosis. Proliferation Rate (Cell Division) The rate of the cancer s proliferation is another measure of a cancer s aggressiveness. MIB-1 (also know as Ki-67) or S-phase fraction, terms you may see on your report, are common ways to measure proliferation. The proliferation rate describes how quickly the tumor cells are growing. When the proliferation rate is low, the cancer is growing more slowly and the prognosis is better. Your pathology report may include additional information not described on this fact sheet. For example, some labs are measuring HER2 (a protein found on 20 to 25 percent of breast cancers) levels. Biological therapies are being studied in clinical trials. One such therapy (Herceptin) targets breast cancer cells that have high levels of this (HER2) protein. Ask your doctor to explain any part of the report you do not understand. Related fact sheets in this series: biopsy what is breast cancer? coping with a cancer diagnosis types of breast cancer inflammatory breast cancer metastatic breast cancer 4 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

13 coping with a cancer diagnosis Feel like you are losing control? When told they have breast cancer, many women feel they have lost control of their lives. Still others feel overwhelmed by all the decisions they have to make. These feelings are normal, but do not let them keep you from taking action. First, learn about breast cancer. Get information about clinical trials, treatment options and side effects. Remember, doctors can make recommendations, but decisions must be made by you and your doctor. Knowing what to expect is another key to staying in control. It may also help to keep as normal a routine as possible. However, be patient with yourself. Coping with breast cancer requires expression of emotion, a fighting spirit and support. The positive side Having breast cancer may feel like the worst thing that has ever happened to you. But there are some positive things you can take away from the experience. Many women say that surviving breast cancer has given them a renewed appreciation for life and for their social support network. Others have made new friendships, rekindled old ones and found an inner strength that they did not know they had. This has led many women to become involved in helping others cope with breast cancer. If you are interested, you can help to educate and make a difference for yourself and others. Contact an organization such as the Susan G. Komen Breast Cancer Foundation or your local hospital to see how you can get involved. Handling treatment The goal of any treatment for breast cancer is to offer the best possible chance of recovery. But even the best treatments have side effects. Some of the more common ones include fatigue, hair loss and short term limited arm movement. Although each woman experiences side effects a little differently, changes in physical appearance often lead to a change in body image. This can lead to stress and anxiety. Having a mastectomy can be difficult too, even though there are options such as reconstructive surgery and prostheses designed to help restore body image. Coping with breast cancer A diagnosis of breast cancer can evoke a wide range of emotions, from denial to guilt, helplessness, anxiety and fear. It is obviously a stressful time for many women and their families. That is why it is especially helpful to build a strong support network of family and friends and to make time to share your feelings with others. Support from a partner, family member, friend, other breast cancer survivors or support group members, your co-survivors, can help you through this difficult time. Make time to share your feelings with others. They can be there to listen to your concerns, share their experiences and help you make decisions regarding your treatment. They can also help you gather information about breast cancer and even share some of your day-to-day tasks. Many women also find strength in their spirituality and faith. A social worker or counselor can also help. They can teach you ways to manage your issues about breast cancer and how to cope with your feelings. Finally, talking to your doctor is one of the most important things you can do. Taking time to talk honestly with your doctor will help you gain trust and confidence. It will also help you work together as a team to make important treatment decisions in the future. The Reach to Recovery program sponsored by the American Cancer Society provides support for breast cancer patients directly from 5

14 Resources ORGANIZATION American Cancer Society for information about the Reach to Recovery and Look Good Feel Better SM programs ACS BOOK Chicken Soup for the Surviving Soul: 101 Inspirational Stories to Comfort Cancer Patients and Their Loved Ones by Jack Canfield (Health Communications, Inc.). When Life Becomes Precious: A Guide for Loved Ones and Friends of Cancer Patients by E.N. Babcock (Bantam Books). other breast cancer survivors. The Look Good Feel Better SM program helps radiation or chemotherapy patients by providing beauty tips and supplies to enhance appearance and self-image during treatment. During treatment, you may need help with everyday errands or chores. Do not be afraid to ask for it. Ask for help with daily activities like household chores, grocery shopping and child care. You may also need someone to drive you to your doctors appointments. Being clear about what you need will greatly increase the chances you will get the help you need. PAMPHLETS I Still Buy Green Bananas: Living with Hope, Living with Breast Cancer by the Y-ME National Breast Cancer Organization What s Happening to Me? Coping and Living with Breast Cancer by the Susan G. Komen Breast Cancer Foundation I M AWARE Related fact sheets in this series: getting the support you need talking with your doctor breast health resources 6 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

15 making treatment decisions Choosing the best treatment for you When evaluating different treatments, the best treatment for your cancer should always be your first concern. However, there are other things to consider, too. Before making your final decision, ask yourself these questions: Will I have to travel to receive treatment? Depending on where you live, you may have to travel to another city to receive treatment. Some treatments will require you to travel more often than others. If your treatment will require you to travel more, you may want to consider moving closer to your treatment center. The hospital social worker can help you find a temporary place to live while you are undergoing treatment. Do I have the chance to participate in a clinical trial? In a clinical trial, you have the chance to be one of the first patients to try a promising new breast cancer treatment. You may also contribute to research on breast cancer that could someday help other women. On the other hand, a new treatment may not be any more effective than standard treatments. Ask your doctor about the pros and cons for you. Did you know? Certain types of breast cancer treatment are more common in some regions of the country than in others. For example, mastectomy is more common in the South and the Southwest, while breast conserving therapies are more common in the Northeast, West and Midwest. This happens because doctors tend to recommend the treatment with which they are most familiar. Be aware of these trends when choosing your treatment. What kind of social support do I have? Do you have someone to drive you to and from treatment? Is someone able to stay at home with you while you recover? Some kinds of treatment may require more support than others. Which treatment regimen am I most able to follow? For example, if your schedule is flexible enough for a clinic visit every day for six weeks, breast conservation with radiation therapy might be a good option for you. However, if your lifestyle does not allow you to have daily radiation therapy, mastectomy might be a better option. Also consider issues such as child care, work responsibilities and body image after treatment. The cost of breast cancer Q: I just found out that I have breast cancer. My doctor told me that treatment will take several months. Could I lose my job? How will I pay for treatment? A: Though it is unfortunate that you need to worry about money at a time like this, medical care is not free. It would be nearly impossible for the average person to pay for the costs of breast cancer treatment out of her own pocket. That is why it is so important for you to know your rights concerning your job and to be an informed health insurance consumer. 7

16 Resources ORGANIZATIONS The Susan G. Komen Breast Cancer Foundation I M AWARE National Cancer Institute s Cancer Information Service CANCER BOOKS The Breast Cancer Survival Manual, 2nd ed, by John Link (Henry Holt and Company). Dr. Susan Love s Breast Book, 3rd ed, by Susan M. Love with Karen Lindsay (Addison-Wesley). Mayo Clinic Guide to Women s Cancers by Lynn C. Hartmann and Charles L. Loprinzi, 2005 (Mayo Clinic Health Information). First of all, it is against the law for your employer to fire you because you have breast cancer. Your job may be protected under the Family and Medical Leave Act of 1993, which allows you to take 12 weeks off work without pay and keep any health insurance benefits your job offers. It also allows you to keep your old job (or a job with equal pay, status and benefits) when you return. To find out if the Family and Medical Leave Act applies to you, call the Women s Bureau in the U.S. Department of Labor at Most women who undergo therapy for early breast cancer are able to continue working. If you already have health insurance, carefully review your policy. Look for any gaps and limitations in coverage. You may want to ask a lawyer to help you do this. Make sure you do everything you need to do to keep your policy active, including paying your monthly premiums. If you are getting a new policy, do not cancel the old one until the new one is in effect and waiting periods for pre-existing conditions are over. After you decide on a treatment and submit claims to your insurance company, keep good records. Photocopy all your claims and take detailed notes any time you talk to your insurance company, including the date, time, the person s name and what you discussed. If you do not already have health insurance, it may be difficult to get. Call your hospital and ask to speak with a social worker. Describe your situation and ask for advice. You can also call the National Coalition for Cancer Survivorship at YES NCCS ( ) for information about getting health insurance after a cancer diagnosis. Related fact sheets in this series: chemotherapy coping with side effects radiation therapy coping with side effects breast reconstruction & prosthesis lymphedema alternative & complementary therapy treatment choices an overview 8 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

17 treatment choices an overview Types of treatment Surgery and radiation therapy are local treatments because they treat a small area of the body. Studies have shown that breast conserving therapy and mastectomy are equal in terms of their effectiveness. Breast conserving surgery involves surgical removal of only the cancerous area of the breast and some surrounding normal tissue. Usually, underarm lymph nodes are also removed. This procedure is often called a lumpectomy. Side effects can include temporary loss of arm movement and lymphedema (fluid build-up that causes swelling in the arm and hand on the surgery side). Although there is a chance that not all the cancer will be removed, the breast is saved, the surgery is less invasive and an overnight stay in the hospital may not be required. Radiation therapy is generally required to decrease the chances of recurrence. Mastectomy involves surgical removal of the entire breast and usually some underarm lymph nodes. Side effects may include temporary soreness, loss of arm movement and lymphedema. Mastectomy is an invasive procedure, requires a short stay in the hospital and can have an emotional impact. However, radiation therapy often is not required and there are several options for reconstruction if a woman chooses. There is a small chance that not all the cancer will be removed with a mastectomy. Radiation therapy involves using high energy X-rays to destroy cancer in the breast, chest and axillary lymph nodes. It is most often used with breast conserving surgery, but may also be recommended after a mastectomy for women with four or more positive lymph nodes or women with breast cancers over 5 cm. in size or those with close or positive margins (cancer cells close to or at the edge of the surgically removed breast.) Side effects may include fatigue, soreness and swelling in the breast area and lymphedema that may develop later. It is a local treatment because it treats a small area of the body. Adjuvant therapy is used after local treatment to kill any cancer cells that may have escaped from the breast and spread to other parts of a woman s body. Adjuvant therapy includes chemotherapy, hormone therapy and biological therapy. Chemotherapy involves using drugs to kill cancer cells that may be in a woman s body. The treatment is given one or two times a month for 3 to 6 months. Side effects can include hair loss, nausea, fatigue, early menopause, hot flashes and lowered blood counts for a short time. It is a systemic treatment because it treats the entire body. Questions to ask your doctor How long do I have to make a treatment decision? What procedures will my insurance cover? Which form of treatment offers me the best chance of survival? Where will my surgical scars be and what will they look like? Will I need a blood transfusion? Can I donate my own blood? What side effects can I expect during each stage of treatment? How can that be managed? How long will I have to stay in the hospital? How much work will I miss? How many of my axillary nodes are involved? Will I need radiation therapy, chemotherapy, hormone therapy or biological therapy? Why or why not? Choosing your treatment Step 1: Learn all you can Take some time to learn all you can about your type of breast cancer and your treatment options. Try not to let anyone pressure you into making a decision about your course of treatment before you are ready. Your breast cancer took a long time to develop and it is not going to get worse overnight. You have time to get the information you need to make the right decision. Visit the library, search the Internet, request pamphlets from health care providers and organizations that help cancer patients and ask your doctor(s) all your questions so you may understand your options. (continued next page) 9

18 (con t ) Step 2: Get a second opinion It is very common to seek a second, or even a third opinion from other specialists. Some insurance companies and HMOs actually require you to get a second opinion. Most doctors will not be offended that you want a second opinion. After all, it can only add to your knowledge about your breast cancer. Step 3: Get a medical team Finding good doctors to work with you is the best way to decide what treatments are right for you. Most insurance plans will provide you with a list of doctors to choose from. Call the local office of the American Medical Association or go online at to find out more about the doctors in your area. Most women with breast cancer need to make decisions about what type of breast surgery to undergo; whether to undergo radiation therapy, chemotherapy or hormonal therapy; and whether to undergo breast reconstruction. All women with breast cancer should talk with a medical oncologist to discuss their specific treatment needs, a specific treatment plan and identify who will speak for them should they be unable to speak for themselves. Hormone therapy involves using drugs to prevent your body s hormones, especially estrogen, from promoting the growth of any cancer cells that may remain after surgery. The therapy may involve taking a drug, like tamoxifen, for several years, or it may involve other drugs to decrease the body s production of estrogen. Side effects can include hot flashes, vaginal dryness, weight gain and rarely, depression. It is a systemic treatment because it treats the entire body. Biological therapy involves using the body s immune system to fight cancer and reduce the side effects that are caused by other treatments. These therapies are relatively new and many are still being studied in clinical trials. Herceptin is a biological therapy that targets breast cancer cells that have high levels of a protein called HER2. Herceptin has been approved by the FDA to treat certain metastatic breast cancers that contain high levels of HER2 (20 to 25 percent of breast cancer). Neoadjuvant chemotherapy is sometimes used before surgery to help shrink the size of the tumor. The side effects are the same as for adjuvant chemotherapy. Related fact sheets in this series: breast surgery chemotherapy hormone therapy radiation therapy lymphedema 10 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

19 diet & nutrition during treatment Weight changes Some people in treatment for breast cancer will have weight changes. Weight gain may be due to fluid retention and/or increased appetite caused by some cancer medications or the onset of menopause. Weight loss may be a result of poor appetite due to the side effects of treatment. It is important to try to maintain your normal body weight with proper nutrition and exercise. Tell your doctor or a registered dietitian if you notice a weight gain or loss of five pounds or more in one month. They will look into what is causing this change and give you advice for your individual needs. Nutrition supplements Contrary to popular belief, most women in treatment for breast cancer do not need to take a nutrition supplement. You can usually get what you need by making a few changes to the foods you normally eat. If you are having trouble eating, check with your doctor or registered dietitian. They can give you tips on adding more protein or calories to your diet. Talk to your doctor before adding supplements to your diet. Some may interfere with your treatment. Common concerns Treatment for breast cancer may cause side effects that can directly impact your diet. If you experience any of the side effects listed below, be sure to tell your doctor and registered dietitian. Following the tips listed under each side effect will also help. Side effects related to your diet I don t feel like eating. Eat smaller meals, more often throughout the day. Eat whatever sounds good to you, even if it is not the most healthy. Eating well during treatment Eating well has never been more important than it is right now. When you are going through treatment for breast cancer, good nutrition will: help keep you strong help your body rebuild tissue that has been damaged by treatment help your body deal with the side effects of treatment help your body fight off infection Be sure you eat foods from all the food groups: breads and grains, fruits, vegetables, meats and dairy. You may even need to eat more high-protein foods during treatment. High-protein foods and enough calories will give your body the energy it needs to keep up with your treatment plan. Just as every person responds a little differently to cancer treatment, people also respond differently to the foods they eat. Ask your doctor to refer you to a registered dietitian (RD) who can help you choose the right foods for your unique needs if you are having trouble eating. Foods just don t taste or smell the same. Try foods that are tart, like lemon pudding, or try stronger seasonings, like oregano and rosemary. Avoid strong smelling meat, such as beef. Try chicken, turkey and eggs. 11

20 My mouth and throat are very sore. Eat softer foods such as mashed potatoes, macaroni and cheese, milk shakes, pudding and applesauce. Eat foods at room temperature. Foods that are too hot can make your sore mouth feel worse. What will help me with constipation? Make sure you get plenty of fluid every day. Eat high-fiber foods such as whole grain breads, fresh fruits and vegetables, brown rice and dried beans. Resource National Cancer Institute My mouth is really dry. Suck on hard candy and eat popsicles or fruit juice bars. They help produce more saliva. Add gravy, broth and sauces to your foods to make them more moist. Diarrhea has become a problem for me. Make sure you get plenty of fluid throughout the day. Water, broth and grape juice are good choices. Eat foods low in fiber such as rice, pasta, cottage cheese, yogurt, white bread and smooth peanut butter. I m always so nauseated and feel like I have to vomit. Ask your doctor about drugs called antiemetics [an-tee-eh-met-iks]. They can help control nausea and vomiting. Eat more bland foods such as toast, crackers, oatmeal and clear liquids. Avoid greasy and spicy foods. Related fact sheets in this series: chemotherapy coping with side effects radiation therapy coping with side effects alternative & complementary therapy 12 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

21 clinical trials What is a clinical trial? Clinical trials are carefully controlled research studies conducted with actual patients. These studies test the safety and potential benefits of new treatments and the effectiveness of new ways to diagnose or prevent disease. They also identify risks of a specific drug or treatment that may not yet be known. Clinical trials have been responsible for many advances in breast cancer treatment, such as lumpectomy, the use of tamoxifen and screening mammography. There are three main types of clinical trials: Phase I Phase II Phase III tests to see if a new treatment is safe for humans and to look for early signs of effectiveness tests to see if the treatment works against breast cancer compares the effectiveness of the new treatment against a standard treatment Before a treatment is tested in a clinical trial, it has been studied in a laboratory where treatments are tested on animals. Laboratory research helps identify therapies which could benefit breast cancer patients. However, treatments that seem to work well on animals in the lab do not always work as well for people. That is why clinical trials are needed to determine the safety and effectiveness of a treatment in human patients. To protect patients and to provide consistent testing procedures, clinical trials must follow a strict plan called a protocol. The protocol follows medical, ethical and legal guidelines to ensure patient safety. As part of the protocol, patients may be randomly assigned to one of two study groups one group that receives the treatment being studied and one that receives the standard treatment. Enrolling in a clinical trial Following a diagnosis of breast cancer, patients are faced with many decisions. One of the most important ones is the decision about which treatment is best for you. Clinical trials are an excellent way to receive treatment for most women but are not an option for everyone. With the help of your doctors and trained medical professionals, you can make an informed choice. On the back of this fact sheet is a list of the pros and cons of participating in a clinical trial, as well as a list of resources about where you can obtain more information on clinical trials. Review this information and write down any questions you have. Then ask your doctor. Your questions are important, and most doctors will take the time to carefully go over them with you. Also, try to get input from family members, friends and other people who are important in your life. They may also be affected by your treatment decision. 13

22 Informed Consent Before enrolling in a clinical trial, all patients must sign an informed consent form. Patients will be asked to read the form or they can have it read to them. This form describes what will be involved in participating in a clinical trial, including possible risks and benefits. Read this form carefully or go over it with your doctor. If there are parts of it you do not understand, ask your doctor or the physician leading the study to explain it to you. Remember, you can leave the study at any time if you feel it is no longer in your best interest to participate. Resources If you would like more information about clinical trials or specific studies currently being conducted, contact one of the resources listed below. ORGANIZATIONS National Cancer Institute CANCER American Cancer Society ACS INTERNET CenterWatch Clinical Trials Listing Service. National Institute of Health. The Pros and Cons of Clinical Trials Breast cancer patients who are thinking about entering in a clinical trial should discuss the risks and benefits with their doctor. For some patients, it may be best to use standard treatment. Others may be excellent candidates for treatments being tested in clinical trials. Some of the main pros and cons of participating in clinical trials are listed below. Pros You could have the chance to get a new treatment that may be more effective than the standard therapy. You will be helping to add to new research that could improve cancer treatment in the future. Even if you are not one of the patients assigned to receive the new treatment, you will still get the best standard treatment that is available. Cons You may feel that because the treatment being tested is new, it is automatically better than standard treatment. However, for you, the new treatment may not work as well as the standard treatment. If the study is a randomized trial, you cannot choose among the treatment options (you will be assigned to one treatment or another.) The new treatment being tested may have unexpected side effects. In some cases, your insurance company may not cover all the costs associated with being in a clinical trial. Usually any extra costs are paid for by the research program, but it is important to ask about this. Related fact sheets in this series: treatment choices an overview making treatment decisions current research on drugs & treatments 14 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

23 breast surgery Surgical treatment of breast cancer Surgery is the oldest form of cancer treatment and it remains an important part of cancer treatment today. Surgery is now often combined with other types of treatment such as radiation, chemotherapy and hormone therapy to achieve greater success. Types of breast cancer surgeries There are two main types of surgeries for breast cancer: breast conserving surgery (lumpectomy) and mastectomy. With breast conserving surgery, the surgeon tries to spare and preserve as much of the breast tissue as possible. With a mastectomy, the entire breast is removed. Which surgery is best for you? Ask your primary doctor to recommend surgeons to you. Find out more about the surgeons qualifications, ability and experience by calling their offices or the local medical society. Choose a surgeon who has special expertise in breast surgery. Ask your surgeon which surgery options are best for you and why. You may want to consider a second opinion if you have several surgical options. BREAST CONSERVING SURGERY (which is usually followed by radiation therapy): In a lumpectomy, the surgeon removes the breast cancer, some normal tissue around it and usually some of the lymph nodes in the underarm. This procedure may also be called partial or segmental mastectomy. MODIFIED RADICAL MASTECTOMY: In a modified radical mastectomy, the surgeon removes the breast, the lining above the chest muscles and some of the underarm lymph nodes. Think about what treatments you are willing to undergo. For example, if driving for daily radiation therapy is not possible, then breast conserving surgery may not be the best option for you. Research has shown breast conservation with radiation therapy to be equally effective treatment as mastectomy for early stage breast cancer. TOTAL MASTECTOMY: In a total (or simple) mastectomy, the surgeon removes the entire breast. RADICAL MASTECTOMY: Rarely done now, a radical mastectomy involves removing the breast, chest muscles and most of the lower, middle and upper lymph nodes. 15

24 You are not alone If you are facing breast surgery, remember that there are millions of women who have been where you are today. They have experienced the same fears, made the same tough decisions, gone through surgery, recovered and are living full, productive lives. Best of all, they are more than willing to talk with you and to listen to you. You can find these women in groups like American Cancer Society s Reach to Recovery program and the YWCA ENCOREplus program. Ask a member of your health care team (doctors, nurses, dietitians or social workers) how to get in touch with these groups. They can help you find support groups in your area. If you have access to the Internet, you may be able to find support groups online. Resources American Society of Clinical Oncology offers referrals to a surgical breast oncologist American Society of Plastic and Reconstructive Surgeons provides a list of board-certified plastic surgeons in your area CancerCare for Online Support offers support groups for people who have cancer, their parents and friends. Related fact sheets in this series: chemotherapy radiation therapy axillary lymph nodes breast reconstruction & prosthesis 16 What to expect after surgery Before surgery, ask your doctor about what changes you might expect afterwards. These may include the following: Like any surgery, there is always a risk of infection, bleeding or slow healing of the wound. If lymph nodes have been removed, you may experience collection of fluid under your skin, tingling, numbness, stiffness, pain, weakness or swelling in your arm. Some women experience none of these symptoms. Side effects like these should go away, especially with physical therapy. The therapist will suggest exercises you can do to regain movement and strength in your arm. If the aftereffects of surgery do not go away, be sure to tell your surgeon. In the end, only a scar should remain. Resume your normal activities as you feel comfortable and as prescribed by your doctor. This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

25 radiation therapy What to expect The most common radiation treatment for breast cancer is external radiation therapy. It uses a large machine to direct a beam of radiation at the cancer site from outside the body. A typical course of treatment is 5 days a week for 5 to 7 weeks. During this time, a woman receives small amounts of radiation daily to the entire breast or chest wall, if the breast has been removed; and, if necessary, the lymph nodes. By using small amounts of radiation daily, less damage is caused to normal cells, allowing them to recover more quickly. After the first course of treatment, a boost dose of radiation is given in the same area of the breast where the tumor was removed. There are two types of boost treatment. The most common one is given externally (as in the first course), and may last from 1 to 2 weeks. The other type of boost is called internal radiation therapy where a radioactive substance (an implant) is inserted into the tumor area. Usually the implant remains in the breast 2 to 3 days before it is removed. Clinical trials are in progress looking at internal radiation (brachytherapy) and intra-operative therapy as treatment for breast cancer. These methods may prove to be alternative treatment options for some women in the future. It is a team effort Women having radiation therapy do not go through it alone. They have a whole team of people working with them to make sure they get the best treatment. This team may include: A radiation oncologist a doctor trained in using radiation to fight cancer; A radiation physicist to make sure the machine delivers the right amount of radiation; A radiation therapist to run the radiation therapy machine; A dosimetrist to figure out how much radiation and how many treatments are needed; A radiation therapy nurse to help manage side effects and provide information about the treatment; and, other team members may include a dietitian, physical therapist or social worker. Why radiation therapy? Radiation therapy (also called radiotherapy) is the use of highenergy rays, usually X-rays, to kill cancer cells. Radiation is very effective in killing fast growing cells like breast cancer. Some healthy cells are also damaged during radiation therapy, but these can recover. Sometimes radiation is given before surgery to shrink tumor cells. But most often it s given after surgery to stop the growth of any cancer cells that may remain. This reduces the chance of the cancer returning (recurrence). For example, women who have had a lumpectomy without radiation therapy have as much as a 40 percent chance of recurrence. * This risk is reduced to about 10 percent when radiation is given after lumpectomy. *Fisher B, Anderson S, Redmond C, et al. (1995): Reanalysis & results after 12 years of follow-up in a randomized clinical trial... N Engl J Med, 333:

26 Resources The Breast Cancer Survival Manual 2nd ed. by John Link (Henry Holt and Company). Breast Cancer: The Complete Guide by Yashar Hirshaut and Peter Pressman (Bantam Books). See Chapter 8. Mayo Clinic Guide to Women s Cancers by Lynn C. Hartmann and Charles L. Loprinzi (Mayo Clinic Health Information). Radiation therapy and you: A guide to self help during treatment by the National Cancer Institute cissecure.nci.nih.gov/ncipubs/details.asp? pid=696 National Comprehensive Cancer Network index.htm After radiation treatment It is recommended that you have physical exams every 6 months for 5 years following diagnosis. From then on, you will need physical exams every year. Mammograms are also recommended after lumpectomy and radiation therapy to make sure all the cancer has been removed. Mammograms of the affected breast should be done 6 months after completion of radiation treatment and then mammograms of both breasts should be done every 12 months Step-by-step Here is what you can expect during radiation therapy: 1 You will meet with your radiation oncologist to discuss your treatment in detail. 2 You will have a 1 to 2 hour planning session called a simulation. A radiation therapist will pinpoint the exact area which will receive radiation (called the treatment port). Treatment ports will be marked on your skin with indelible ink or tattoos. These marks help the therapist aim the radiation at the same area every time you have a treatment. Be careful not to wash these marks off, and tell your therapist if they start fading. 3 You will meet with a radiation therapy nurse to discuss skin care, diet and how to cope with possible side effects. 4 Your radiation oncologist, dosimetrist and radiation physicist will meet to decide how much radiation is needed, how it should be given and the number of treatments needed. 5 Your treatment will begin 1 to 2 days after the simulation. Daily treatment time ranges from seconds to several minutes, and is done on an outpatient basis. The treatment period is about 5 to 7 weeks. Related fact sheets in this series: radiation therapy coping with side effects making treatment decisions clinical trials 18 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

27 chemotherapy How is it given? There are many different chemotherapy drugs used today. Some drugs work better in combination than alone, so your doctor may give you more than one to take. A few anti-cancer drugs are taken by mouth or injected into the muscle or fat tissue below the skin, but most are injected into a vein. Treatments can be given at home, at the doctor s office or in the hospital depending on the type of chemotherapy. When is it given? Chemotherapy usually starts within 4 to 12 weeks after surgery. Today it is commonly given on a 21-day or 28-day cycle. Drugs are generally given weekly or once every third week, with a rest period to allow your body to regain strength. Some studies are looking at a shorter schedule giving chemotherapy more often along with drugs to control side effects. This may prove to be beneficial for some women.the length of the cycle will depend on the type of drugs used. The length of the treatment period will vary, but it typically lasts from 3 to 6 months. What is chemotherapy? Chemotherapy is the use of anticancer drugs to treat cancer. It can be used to treat cancer by stopping the growth of cancer and by killing cancer cells that have spread to other parts of the body. Chemotherapy is given after surgery (called adjuvant chemotherapy) or before surgery (known as neoadjuvant chemotherapy) to reduce the risk of breast cancer returning. Classes of chemotherapy drugs Each chemotherapy drug belongs to a class of drugs. Each class has a different effect on cancer cells. That is why different anti-cancer drugs are often used in combination with each other. The major drug classes are described below. DRUG CLASS Alkylators Antimetabolites Antimicrotubule agents Antitumor antibiotics HOW THEY WORK by damaging genetic material that controls tumor cell growth by interfering with cancer cell division by preventing cancer cell division by damaging genetic material of cancer cells and stopping cell reproduction EXAMPLES (Brand name) cyclophosphamide (Cytoxan) methotrexate (Methotrexate) 5-fluorouracil (5-FU) paclitaxel (Taxol) docetaxel (Taxotere) vincristine (Oncovin) vinblastine (Velban) vinorelbine (Navelbine) doxorubicin (Adriamycin) 19

28 Resources ORGANIZATIONS The Susan G. Komen Breast Cancer Foundation I'M AWARE American Cancer Society ACS BOOKLET Chemotherapy and You: A Guide to Self-Help During Cancer Treatment. National Cancer Institute. BOOK The Breast Cancer Survivor Manual, 2nd ed. by John Link (Henry Holt and Company). Points to consider Many women are afraid of having chemotherapy because of its side effects and the toll it can take on the body. Although chemotherapy does have a dramatic effect on the body, it is often a successful treatment. It reduces the risk of cancer returning after surgery. Doctors know more about chemotherapy than ever before. The doses are more accurate and there are a variety of medications to help minimize side effects. Expect some changes in your life during chemotherapy. Your daily routine will be affected. You may be able to continue to work and keep doing your normal activities. Or you may be too tired to do all the things you normally do. That s okay. Your friends and family can help. You will start to feel better once the treatment is over. Until then, your doctor and nurses can give you suggestions on how to manage your daily activities. Related fact sheets in this series: chemotherapy coping with side effects making treatment decisions getting the support you need new drugs for breast cancer treatment clinical trials 20 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

29 life after treatment Emotional effects of treatment The last day of treatment Visions of cake and celebration often go along with thoughts about the last day of treatment. But many women report that they feel let down, sad, tired and anxious. One way to help ease into this change is to do something special to mark the day. You may not feel like having a big party, but a quiet dinner with your loved ones or a special outing may be good ways to celebrate. Will I ever feel normal again? You may wonder when you will feel like your old self again. Friends and family often think that just because your active treatments are over, you are fully recovered. Plan on it taking at least as long as you were in treatment to recover physically, sometimes longer. Take the time you need before agreeing to new obligations. If you find you have trouble saying no it may help to have a script ready. Practice saying, No thanks, I d rather not take on anything extra right now. When breast cancer treatment begins, many women think that their last day of treatment will signal the end of this challenge in their lives. But most women report ongoing physical and emotional issues that they did not expect. Lasting side effects of treatment and emotional concerns are normal. It helps to know what to expect after treatment ends. One source of anxiety is that you are now very aware of every ache and pain in your body. Each trouble brings with it the fear of the cancer s return. This is normal and will ease with time. If you are concerned about any symptoms, contact your doctor instead of worrying. The anxiety of medical tests Follow-up tests, though necessary, can bring the fear of a return of the cancer. This is normal. It can help to schedule your tests so that you have the results that same day or the next. Bringing a friend with you may also help. Some women like to schedule an appointment with their doctor to go over the results, either in person or over the phone, so they do not have to wait for the office to call them. The fear of the cancer returning The fear that breast cancer may return is a normal reaction. Most women report that, as time goes by, they think of it less and less often. Getting support from friends, family, clergy, therapists or support groups are all ways to help handle this anxiety. If you find that your fears are not easing over time or that they interfere in your daily life, you should talk to your doctor. You may be suffering from depression. Getting the support and treatment you need is important for your health and the quality of your life. Physical effects of treatment Surgery After surgery you may be faced with getting used to the way your breasts look. There may be scars, changes in shape or the absence of breast tissue. If you have had a mastectomy you may be thinking about wearing a prosthesis or having reconstructive surgery. No matter what you decide, there is no need to rush. If you are thinking about reconstruction, take the time to find an experienced surgeon and talk over the risks and benefits of your options. It is also possible to have reconstruction done on the same day as the mastectomy. 21

30 Related fact sheets in this series: follow-up breast reconstruction and prosthesis alternative and complementary therapy lymphedema tamoxifen 22 If you had surgery that removed lymph nodes under your arm you may be at risk of lymphedema [lim-fa-dee-ma]. This is a swelling of the arm and hand due to the build-up of lymphatic fluid. It can occur shortly after surgery or up to 20 years after treatment. Ask your surgeon about what to look for and how to reduce your risk. Chemotherapy After ending chemotherapy you may be looking forward to having your hair grow back. Hair grows about a halfinch per month so it may take some time before you are able to style it as you did before. Sometimes when it grows back in, it is a different color and texture. Chemotherapy can cause sudden menopause. The closer a women is to her natural menopause, the more likely this is to happen. This is a sudden physical change and comes with all of the symptoms of menopause. Hormone replacement therapy (HRT) is not an option for managing these symptoms due to the role hormones play in breast cancer. However, your doctor can help you find other ways to manage these symptoms. In younger women, the menopause caused by chemotherapy can be temporary. Chemotherapy often leads to memory problems. This is sometimes called chemobrain, and is a general sense of mental fuzziness and short-term memory problems. Most women say that these symptoms improve with time, although no one is sure if they ever return to pre-treatment levels. Talk to your doctor to rule out side effects from medicines or depression. Weight gain is a common side effect of chemotherapy. Exercise, even just walking, can help with weight loss and can also help relieve stress. It is also very important to eat a healthy diet. Not only will this help with weight loss, it helps your body heal. Radiation Therapy Radiation therapy can cause fatigue and skin changes. These changes usually start to get better once treatment ends. Some breast changes like soreness, swelling, firmness, and color changes can last for up to a year or longer. Hormone therapy Most side effects from hormone treatments end once treatment is over. Some women though, continue to take tamoxifen (Nolvadex) or an aromatase inhibitor (Arimidex or Femara) to reduce the chance of the cancer returning. The most common side effects of tamoxifen include hot flashes, vaginal dryness or discharge, weight gain, mild nausea, fatigue, depression and decreased libido. These side effects are usually mild and easily treated. The side effects of the aromatase inhibitors include bone pain, hot flashes, fatigue, joint pain, osteoporosis and fractures. Your doctor may prescribe other medication with an aromatase inhibitor to prevent osteoporosis. This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

31 follow-up I m done with treatment. What happens now? As your doctor may have told you, once you have had breast cancer, you have a higher risk for developing a new breast cancer than someone who has never had breast cancer. That is why it is so important to get the followup treatment and care your doctor recommends. With proper follow-up, your doctor can keep track of how you are recovering including taking care of side effects. In addition, if there is a local (in the breast, chest wall or lymph nodes) recurrence of breast cancer, it can be detected early when treatment has the best chance to succeed. Either your primary care doctor, oncologist, surgeon or you can choose to talk it over with your other doctors and coordinate your follow-up care whichever you prefer. If you are not sure which way to go, ask other women whom they have chosen to coordinate their care, and why. Do not be afraid that you will be left alone, not knowing what to do. You will have the care you need. Recommendations for follow-up care The National Comprehensive Cancer Network has established the following guidelines for follow-up of breast cancer treatment: 1. Have a physical examination performed by a doctor every 4 to 6 months for 5 years. 2. Perform breast self-exam (BSE) every month. (For step-by-step breast self-exam instructions, go to 3. Have a mammogram every 12 months. For women treated with breast conserving surgery and radiation therapy, have a mammogram 6 months after radiation therapy ends, then of both breasts every 12 months. 4. Understand which symptoms should be reported immediately (see box to the right). 5. Have a pelvic exam every 12 months if taking tamoxifen and have not had the uterus removed. Symptoms that you should report to your doctor Any changes in the remaining breast(s) and chest area, unusual pain, loss of appetite or weight, changes in menstrual periods, unusual vaginal bleeding or blurred vision. Dizziness, coughing that does not go away, hoarseness, shortness of breath, cough, headaches, backaches or digestive problems that are unusual or that do not go away. Your doctor will examine you and determine the nature of the symptoms and discuss what to do next. After treatment For some women, completing their treatment signals a new beginning in life. At the same time, it can also mark the end of constant support and care. When you reach this point, there are many new issues to think about and plan for. Here are a few of the most common ones: 23

32 Non-standard tests There are several tests that are not normally considered to be standard follow-up procedure for breast cancer. While there is not enough evidence that the majority of women will benefit from them, these tests are helpful in evaluating any symptoms of possible recurrence. These tests include complete blood counts and blood chemistry profiles, bone scans, ultrasounds or CT scans of the liver, chest X-rays and breast cancer tumor marker tests. Resources American Society of Clinical Oncology Call for referral to a surgical breast oncologist. Y-ME National Breast Cancer Organization Call (English) or (Spanish) to speak with trained volunteers who are breast cancer survivors. American Cancer Society s Reach to Recovery program. Call ACS.2345 for information on a program in which breast cancer survivors volunteer to visit and help new patients. How will I know if the cancer returns? Before you complete your cancer treatments, set up follow-up visits with your doctor. Follow-up appointments and monthly breast self-exams will help find recurrent or new breast cancer should this occur. (For step-by-step breast selfexam instructions, go to Am I going to feel sick from now on? No. As you finish your treatment, you may still be tired. Do not fight that your body needs the rest. Aerobic exercise can help speed the recovery process following chemotherapy. Side effects like nausea and hair loss are temporary, and should go away after treatment ends. If nausea and other side effects continue, be sure to tell your doctor. There are often specialized support groups for women at various stages of illness or recovery and self-help groups that are run by breast cancer survivors. These groups are an important source of information and support. Should I re establish my usual routine? Getting back to all the things you used to do, even if it takes some time, will help you feel better. Adding preventive health activities like physical activity, a healthy diet and regular tests such as a bone-density test and a colon exam are the right ways to maintain your health and may also help you have peace of mind. Who should I tell about my breast cancer? It is really up to you. Start with the people you feel most comfortable with. Take your time and wait until you are ready. Will it ever be over? Believe it or not, there may come a day when you stop worrying about cancer and live your life without fear. It is normal to have some fear, but this will lessen over time. You can always get support from groups of women who have gone through what you have, and some who are in the same place as you are now. Related fact sheets in this series: breast cancer detection healthy living if breast cancer returns getting the support you need life after treatment 24 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

33 getting the support you need Types of support There are three main types of support. You may need different kinds of support at different times during your treatment and recovery. Also, you may want or need different kinds of support from different people. Support people may come and go. This is perfectly normal. Informational support providing you with information about breast cancer. This might include finding facts about your type of breast cancer, gathering information about treatment options or talking to others who have had experiences similar to yours. Emotional support looking after your emotional well-being. This might include listening to you, giving you the chance to express your feelings, giving you a hug or just being there when you need a friend. Practical support helping with specific tasks. This might include rides to clinic appointments, helping with cooking or cleaning, or going to the doctor with you to take notes and provide a second set of ears. Getting support 1 The first step is making a list of people who are willing to help. Write down the names of people who might support you in different ways. Your list might include: your partner, children, other family members, friends, support group, co-workers, clergy, neighbors or health care providers. Look outside your existing network of support people, too. Have you met any other women with breast cancer? Can you think of anyone else who may be able to help you in some way? 2 Write down what kind of support you would like most from each of the people on your list. For instance, maybe you would like your doctor to give you informational support, your best friend to give you practical support and your partner to give you all three kinds of support. 3 Tell each person exactly what he or she can do to help you. Be specific. You might ask one to be ready with hugs when you are upset, another to help with housework and someone else to cut out any newspaper articles relating to breast cancer and give them to you. 4 Have a backup support person. Although it is true that you are the one who has breast cancer, the special people in your life have also been affected by your illness. Sometimes your support people will need to deal with their own feelings before they can be supportive to you. Why you need support We are each of us angels with only one wing. And we can only fly embracing each other. ~ Luciano de Crescenzo No woman should face breast cancer alone. Getting the support you need is important to your well-being and coping with breast cancer. Try to surround yourself with people who care and who will help give you the strength you need to go through treatment and begin the process of healing. Sometimes it can be hard to ask for support when you really need it. Many women are used to being caregivers, but not receivers. They reach inward to understand their breast cancer, but do not always think to reach outward for support. It may help to remember that people need you as much as you need them. They will feel good, even honored, that you count on them to help you through this difficult time in your life. What support could do for you physical benefits: reduce stress reduce the side effects of treatment boost your immune system increase your desire to heal reduce the risk of recurrence lengthen your life 25

34 Should you join a support group? A support group can be a key part of your treatment and recovery when you have breast cancer. There is nothing quite like sharing your experience with others who understand what you are going through. Support groups are often led by a professional who guides discussions and helps the group to focus. Most groups require that everything discussed at the group remains within the group. Members usually are not pressured to talk. However, the group benefits most when everyone shares his or her feelings. An online support group may be an option for those who are interested in joining a support group. CancerCare offers online support groups for people who have cancer as well as their partners and family members. If you choose to join a support group, find one that is right for you. There are often specialized support groups for women in different stages of illness or recovery, and other self-help groups that are run by breast cancer survivors. Support groups are a commitment of time and energy, but the women who join them usually agree that it is worth it. If you dislike sharing your thoughts or feelings in front of a group, you may get more comfort by talking to a partner or close friend than by joining a support group. If you decide to join a support group, ask your doctor about local support groups in your area or call the American Cancer Society at ACS.2345 or online at For information about online support groups, go to or call HOPE. Related fact sheets in this series: when the diagnosis is cancer an overview talking with your partner talking with your doctor 26 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

35 talking with your doctor It really is all about you While you may be overwhelmed by your diagnosis, it is still necessary and important to get the most out of each doctor s visit. Try following these guidelines: 1 Be prepared. It is often helpful to gather information about your health concerns from the library (books and medical journals), the Internet or fact sheets like this one. The more you know, the more comfortable you will be talking to your doctor. 2 Write down your questions. Ask open-ended questions like, What are the chances of a woman in my situation surviving? Avoid closed-ended questions that will give you a yes or no answer questions like, Am I doing all right? Start by making a list of 3 to 5 main questions you have for your doctor. Make a copy of the questions for your doctor, too. This will help your doctor to understand and address your specific concerns. 3 Tell your story. When your doctor comes in, ask if you can take a few minutes to briefly explain your situation and concerns. Be as specific as you can. Then give the doctor your list of questions and ask them. 4 Give feedback. If your doctor s responses were helpful, say so. This kind of feedback will encourage your doctor to talk with you, listen to you and continue to help you. You know yourself best No one knows more about your body than you do. Not your partner, not your parents, not even your doctor. So when you talk with any health care provider about your health, remember that you have valuable information they can use. You know about changes in your body and about the problems you may be having now. Share that information. Communication between you and your doctor is one of the best ways to make sure you get the care and satisfaction you deserve. In the final analysis Doctors are very knowledgeable and just like anyone else, they want to do their job well. That means doing whatever they can to help you stay healthy or to get better. Remember, although doctors may know a great deal about breast cancer, they may not truly understand or be aware of all that you are experiencing. You can help your doctor help you by sharing your feelings and concerns. When you are comfortable and at peace with your health and treatment decisions, and when you have a positive relationship with your doctor, you improve your chances of successful treatment and recovery. 27

36 Resources The Susan G. Komen Breast Cancer Foundation fights to eradicate breast cancer by advancing research, education, screening and treatment I M AWARE National Cancer Institute s Cancer Information Service provides information and resources for patients, the public and health care providers CANCER American Cancer Society has research, education and patient service programs to help cancer patients and their families cope with cancer. The Reach to Recovery program has trained breast cancer survivors who visit newly diagnosed patients ACS Stay in control If you have received a diagnosis of breast cancer, it is possible that within minutes of telling you this, your doctor will be talking about what treatment would be best for you. Yet you might want some time to make your treatment decision or to get a second opinion. So please hold everything. This is your life and your body. If you have cancer, this is new to you. The treatment options are even newer. If you need time to process all this new information about your health, ask for it. You have every right to take whatever time you need to deal with your emotions, learn more and explore your options. Delaying a treatment decision for one day or several weeks seldom makes a difference between a good and bad outcome. American Society of Clinical Oncology is a resource containing professionally edited information for oncology professionals and cancer patients American Society of Plastic and Reconstructive Surgeons offers information on cosmetic and reconstructive plastic surgery procedures and a plastic surgeon referral service Y-ME National Breast Cancer Organization offers a national hot line, peer-support groups, volunteer matching, education materials, early detection workshops and many local chapters Related fact sheets in this series: alternative & complementary therapy follow-up making treatment decisions medical vocabulary 28 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

37 talking with your partner Helplessness and fear That is what you may be going through, and that is what your partner may be feeling, too. Imagine what you would think and feel if it were not you but your partner who was diagnosed with breast cancer. Would you feel helpless? Would you feel like you would want to do anything and everything you could to take away the cancer, yet at the same time, there was nothing you could do? Your partner probably feels the same way. Cancer is a disease full of unknowns and your partner will have questions and concerns. Encourage your partner to share his or her feelings. For example you may say, I know you are afraid. I am too. Let s talk about it. However, because you are the one with the cancer, the focus will be on you. Sometimes partners may feel that they really should not ask you for help because they are supposed to be helping you. Your partner needs to hear that you will try to understand what they are going through, especially if they talk to you. Along with the feeling of helplessness may come a fear of losing you. On the one hand, it is a wonderful thing that there is someone to whom you matter so much that the thought of losing you is painful. On the other hand, this is something that you need to allow your partner to talk about as well. Listening to your partner, and talking will help you help each other. Together through it all We are all human Because of this, we need support from others. If you have trouble talking with your partner, ask someone else that you know to help. This might be your doctor or another member of your health care team, a friend or even another family member. They are more than willing to help you both. There are also couples support groups that you can access. You can find out about these from any member of your health care team. Listening to and talking to others who have gone through or are going through breast cancer can be very helpful. You can discuss anything from the most general topics (like nutrition) to the most personal topics (like physical intimacy). Finding support from others will not only help you it will help them also. Think about your relationship with your partner. You have been through both happy and difficult times together. So while your diagnosis may be some of the worst news you have ever received, it may be temporary. The more you and your partner find out about it, the more you will learn that today, breast cancer is a disease that can be treated successfully. Do not be afraid to talk about your feelings. You will find that if either of you hold your thoughts, worries and fears inside, they can create a wall between you and actually cause you to grow apart. A good place to start may be a simple open-ended question such as, What makes you feel good today and how can I help you? Think about all the good times you have shared. Think about the rough times. You have both made it through them all and have stayed together. Actually, for some couples, going through something very serious like breast cancer brings them closer together. Your fears are shared, your joys are shared and both of you can make it through the treatment and recovery from breast cancer together. 29

38 Resources Many support group members can help you in communicating with your partner. Start by calling any of the following organizations, or contact them on the Internet. The Susan G. Komen Breast Cancer Foundation fights to eradicate breast cancer by advancing research, education, screening and treatment I M AWARE American Cancer Society s Reach to Recovery program has trained breast cancer survivors who visit newly diagnosed patients ACS About the term partner What is a partner? While the term may have a different meaning to you than it does to someone else, the generally accepted meaning is that person to whom you are closest. This person is usually (but not always) a non-blood relative and may be your spouse, partner in life, boyfriend, girlfriend and/or your best friend. While it may be difficult right now to find much to be thankful for, having a partner, someone who really cares about you and even loves you, is something for which to be truly thankful. National Family Caregivers Association educates, supports, empowers and speaks up for family caregivers Y-ME National Breast Cancer Organization includes trained volunteers, all of whom are breast cancer survivors (English) or (Spanish) BOOKS Here are some books to help you in talking with your partner: Helping Your Mate Face Breast Cancer: Tips for Becoming an Effective Support Partner by J.C. Kneece (EduCare Publishing). When Life Becomes Precious: A Guide for Loved Ones and Friends of Cancer Patients by E.N. Babcock (Bantam Books). Related fact sheets in this series: getting the support you need sexuality & intimacy when the diagnosis is cancer an overview 30 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

39 sexuality & intimacy How to talk with your partner If it was difficult for you and your partner to talk about your feelings and about sex before you got breast cancer, it will probably still be difficult to talk now. While there is no such thing as the perfect time to talk, some times are better than others. Choose a moment when you are relaxed and alone together. When you feel comfortable, give yourself and your partner permission to talk about your feelings, both good and bad. Above all else, be honest. You may want to try talking about: Your biggest fears Women may be afraid their partner will leave or reject them because of their breast cancer. Men may be afraid of physically hurting their partner during sex. Talking about each other s fears allows you to reassure each other. Birth control A baby that is conceived while you are undergoing radiation therapy or chemotherapy, or while using tamoxifen could have birth defects. That is why it is important to talk to your partner about birth control. After treatment, do not assume that you are infertile unless your doctor tells you there is absolutely no chance of becoming pregnant. Breast Cancer does not have to mean the end of sexuality and intimacy. Rather, it is a new beginning. Intimacy, sexuality and breast cancer In a perfect world, every relationship would provide the intimacy and sexuality a woman needs to feel happy and secure all the time. In the real world, breast cancer can sometimes make it difficult to be sexual or intimate with another person. At times, you may only want intimacy from your relationship. At other times, you may want both, or neither. That s okay and quite natural. Both will enrich your life and bring closeness to your relationship. Your new sex life Breast cancer may change what you like to do and how you like to be touched during sex. You may not even want to have sex for a while. Your partner may not realize this. That is why you need to talk about it. You will probably find your partner is willing to do anything that will make you happy. 31

40 Resources Sexuality and Fertility After Cancer by Leslie R. Schover (John Wiley and Sons). Living Beyond Breast Cancer: A Survivor s Guide for When Treatment Ends and the Rest of Your Life Begins by Marisa C. Weiss and Ellen Weiss (Times Books). Sexuality & Cancer for the Woman Who has Cancer and Her Partner by the American Cancer Society What s happening to the woman I love? by the Susan G. Komen Breast Cancer Foundation, I M AWARE Why don t you Take it easy Bring some romance back into your life. Plan a relaxing candlelight dinner. Take a bubble bath. Take the time to nurture your sexuality. Go slow Who says you need to have intercourse every time you feel sexual? Kisses and caresses can provide just as much pleasure. Get comfortable Sex may be painful if you do not have as much natural lubrication as you are used to. Try using a water-based lubricant like Astroglide or KY Jelly. Do something different Change your sexual routine. Experiment. Try new things. Have some fun. Get some advice Consider seeking advice from a marriage counselor or joining a support group. You can go with your partner or by yourself. Share this list of ideas with your partner. Getting the intimacy and sexuality you need should not be your responsibility alone. Looking in the mirror Breast cancer may or may not change the way you look. But it can change the way you feel and affect your self-image. While most women agree that their breasts are only part of what defines them as a woman, they are still deeply affected by the loss of a breast. A woman s breasts symbolize so many positive things motherhood, sexuality and being a woman. But for some women, breasts also now represent cancer. Most women, and their partners, will need to take time to grieve the loss of a breast. Joining a support group may help you to cope with all the changes in your body and self-image. Some women find these changes difficult, others find strength in their new image of themselves. Remind yourself that healing takes time. At some point, every woman with breast cancer becomes more comfortable with her body. Accepting yourself as you are is all part of the process Related fact sheets in this series: talking with your partner getting the support you need breast health resources 32 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

41 talking with your children First thought my children You have just learned that you have breast cancer. Some of your first thoughts may be about your children. What is going through your mind? Fear fear of the unknown so much is unknown. Should you tell them? What should you tell them? What if they ask you if you are going to die? What will you say? What if you are not around to see them as they grow? There is nothing unusual about having these thoughts or any others that might go through your mind. When something threatens your life, the life of your family is threatened. And your instinct is to protect your family, especially your children. You want to protect them from hearing bad news, and preserve their innocence. Talking to your doctor, nurse or a social worker can help you decide what to say. In the end, you know your children best. You are the best person to decide how and when to tell your children about your cancer. Have I done anything to my daughter? No, you have not handed her a death sentence disguised as breast cancer. Think about it this way: did your mother cause the breast cancer that you have? No. Neither is it the case that you are now giving this disease to your daughter. While there can be a genetic component to the development of some breast cancer, only about 5 to 10 percent of breast cancer is inherited. Having a mother with breast cancer increases your daughter s chances of developing breast cancer somewhat. However, just because you have breast cancer does not mean that your daughter will develop breast cancer also. Talk to your daughter about your concerns. Just like any of your children, allow her to ask questions. If you cannot answer them, ask other breast cancer patients or survivors to share their experiences. Members of your health care team can also help you. If your daughter is 20 years or older, it is especially important that she perform monthly breast self-exams (for step-by-step breast self-exam instructions, visit and get regular age- or doctor-recommended clinical breast exams and mammograms. Screening and early detection offer your daughter the best chance at finding breast cancer early. She can also discuss risk assessment and her options for lowering her risk for breast cancer with her doctor. Your child s perspective You are the anchor of your child s world. And now the anchor is threatened. However you decide to tell your children, try to be as truthful, honest and open as possible no matter how difficult it may seem. You decide how much you want to say. Remember that children just like adults will fill in wherever you leave big gaps. And because children may not know as much as adults, it is more likely that what they fill the gaps with will be wrong. Encourage your children to talk to you and to ask questions. If you are going to be gone for a few days, if you are getting sick from the treatment, if you are losing hair or a breast, let your children know why all this is happening. As an anchor, anything that changes their daily routine needs to be explained. It is a good idea to let your children s teachers know about what you are going through especially for younger children. This may help the children cope if they spend most of the day at school. Finally, just as your children depend on you, you can depend on them too. They can be, and probably want to be, a source of support for you. They will want to listen to you, hug you, kiss you and spend time with you. Let them. 33

42 Resources Chances are a member of your health care team has told you about support groups that you are welcome to join. You can always discuss talking to and dealing with your children with other breast cancer patients and survivors who have children. Start by calling any of the following organizations: American Cancer Society s Reach to Recovery Program has trained breast cancer survivors who visit newly diagnosed patients ACS The Susan G. Komen Breast Cancer Foundation fights to eradicate breast cancer by advancing research, education, screening and treatment I M AWARE Y-ME National Breast Cancer Organization has trained volunteers, all of whom are breast cancer survivors (English), (Spanish) Young Survival Coalition provides information on breast cancer in young women BOOK When a Parent has Cancer: A Guide to Caring for Your Children by W.S. Harpham, M.D (Harper Collins). A children s book is in the back of this book. What s happening to mom? by the Susan G. Komen Breast Cancer Foundation, I M AWARE Related fact sheets in this series: getting the support you need young women & breast cancer breast health resources 34 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

43 end-of-life care Palliative Care Once a woman decides to stop treatment that may prolong her life, palliative care begins. Palliative care, also called comfort care, provides patients with relief of a chronic illness through symptom and pain management. The main goal of palliative care is to provide comfort and a high quality of life for as long as life remains. A hospital social worker can tell you about the palliative care services in your area. Hospice Hospice is a special concept of care that includes and extends beyond palliative care. Hospice focuses on the total care and support of patients and their loved ones near the end of life. Hospice services may include: Comfort care (like symptom control) Sometimes, despite our best treatment efforts, breast cancer grows and spreads. When this happens many women begin treatments that prolong life and improve the quality of life. In time, the side effects of treatment sometimes outweigh the benefits. Some women then choose to stop these treatments. The process leading up to this difficult decision is different for each person. Anger, fear, sadness and loss are all common feelings. There are resources that can help women and their loved ones during this time. Support for family and caregivers Psychological, social and spiritual support for patients and their family Daily care support Grief counseling Hospice care is given by teams of trained professionals, volunteers and family members. One common myth about hospice is that it is a place to go to die. Hospice is not a place, but is a type of care that is received at a place the patient chooses, such as at home or at a hospital. A hospital social worker can also tell you about hospice services in your area. Talking about death Perhaps one of the hardest things to do is talk with your loved ones about dying. There is no right way to talk about death. Starting off by saying, I know that I am dying, can give others permission to talk openly with you. Family members and friends may seem uncomfortable at first. Often, they want to talk but are afraid of upsetting you or saying the wrong thing. The more open that you are with your feelings, the more comfortable they will become. Hospital social workers and hospice workers may also be able to help you open the lines of communication. 35

44 Resources BOOKS Advanced Breast Cancer: A Guide to Living with Metastatic Disease, 2nd ed. By Musa Mayer (Patient-Centered Guides). Handbook for Mortals: Guidance for People Facing Serious Illness by Joanne Lynn, MD and Joan Harrold, MD (Oxford University Press). Dying Well: Peace and Possibilities at the End of Life by Ira Byock, MD (Riverhead Books). ORGANIZATIONS National Hospice and Palliative Care Organization offers information and referrals for end-of-life care Partnership For Caring: America s Voices For The Dying supplies end-of-life information and state-specific legal resources National Family Caregivers Association support and information for caregivers Your Legal Rights One major concern people have is that the end of their lives be a time spent with dignity, and not a time spent fighting unwanted treatments. You do have legal rights at this time. You have the choice of where and how you want your treatment to be handled should you not be able to express your wishes. But you must write a legal document called an advance directive if you want to protect your rights and make your choices known. Writing an advance directive can save your loved ones the stress of making some hard choices during this time. There are two parts to an advance directive. Each state has its own legal requirements so you should get legal advice. You can change or cancel advance directives at any time. Living Will This lists which treatments should be given or withheld (such as life support) and under what circumstances. It can be very specific or general. Durable Power of Attorney for Health Care (Medical Power of Attorney) This allows you to appoint a person to make health care decisions on your behalf should you no longer be able to do so yourself. Copies of these should be given to your lawyer, doctor, hospital and family. It also helps to keep a copy with you. INTERNET CancerCare provides online support, information, and referrals for people at all stages of cancer. Hospice Foundation of America gives general information on hospice and contact information. Growth House provides in-depth information on end-of-life care. Related fact sheets in this series: metastatic breast cancer alternative and complementary therapy clinical trials getting the support you need 36 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

45 racial & ethnic differences Breast cancer racial and ethnic differences Breast cancer is one of the most common cancers among women in the United States. It is the most frequently diagnosed cancer among nearly every racial and ethnic group, including African American, American Indian/Alaska Native, Asian/Pacific Islander and Hispanic/Latina women. Race is not considered a factor that might increase a woman s chance of getting breast cancer. However, the rates of developing and dying from the disease differ among ethnic groups. Some of the reasons for these differences include possible differences in specific risk factors or differences in breast cancer screening rates. The latter could be due to lack of awareness about mammography, cost of health insurance and lack of access to screening facilities. Rate of new cases and deaths from breast cancer by race and ethnicity, United States, Number of new cases per 100,000 people Number of new deaths per 100,000 people Screening can help save lives Access to health care and participation in screening such as mammography and clinical breast exams may explain at least some of the racial and ethnic differences in the rates of death from breast cancer. The risk of dying increases greatly when breast cancer is diagnosed at more advanced stages of disease. For this reason, it is important to perform monthly breast self-exams (BSE), get clinical breast exams (at least every 3 years until age 40, then yearly) and get routine mammograms (yearly for women age 40 and older). All Races All Races 27 White African American 35.4 African American 96.8 Asian/Pacific Islander White 17.3 Hispanic/Latina 26.4 Hispanic/Latina American Indian/Alaska Native 54.2 American Indian/Alaska Native 12.6 Asian/Pacific Islander Data from the National Cancer Institute, SEER Cancer Statistics Review,

46 Resources For more information on breast cancer among specific racial and ethnic groups, contact the following resources: The Susan G. Komen Breast Cancer Foundation I M AWARE National Cancer Institute CANCER American Cancer Society ACS Related fact sheets in this series: Incidence trends The rate of new cases, or incidence of breast cancer, increased overall in Asian and Pacific Islanders, Hispanics/Latinas and whites during The incidence decreased overall in American Indian and Alaska Natives and was stable in African Americans during the same time period. White women have a higher rate of developing breast cancer than any other racial or ethnic group. 1 However, among women under age 35, African Americans have a higher incidence of breast cancer than white women. 2 When Asian women migrate to the U.S., their risk of developing breast cancer increases up to six-fold. 3 Asian immigrant women living in the U.S. for as little as a decade had an 80 percent higher risk of breast cancer than new immigrants. 3 Survival rates Survival rates for breast cancer patients are calculated by determining the percentage of patients who are alive five years after the time of their diagnosis. African American women are less likely than white women to survive for five years after being diagnosed with breast cancer. The five year survival rate for African American women is 74 percent, compared to 88 percent for white women. 1 The five-year breast cancer survival rate for American Indian women is lower than that of any other ethnic and racial group in the U.S. 4 This variation might be explained by differences in breast cancer screening practices among the groups, stage at diagnosis, biology of the tumor and treatment. Studies looking at possible genetic links to increased mortality are ongoing. Mammograms, clinical breast exams and breast self-exams help to detect breast cancer at earlier stages, when chances for survival greatly increase. Death rates Even though white women have a higher rate of developing breast cancer, African American women are more likely to die from breast cancer (see graphs on front side). Some ethnic and racial groups have been less likely to receive breast cancer screening, and thus their breast cancers are often diagnosed at later stages. This later diagnosis increases the chance of dying from breast cancer. 1 American Cancer Society, Breast Cancer Facts & Figures Shavers, V.L., et al, Cancer, Ziegler R.G., et al, Journal of National Cancer Institute, National Institutes of Health, breast cancer risk factors breast cancer detection breast health resources 38 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

47 young women & breast cancer Why do young women get breast cancer? When it comes to breast cancer, young usually means anyone younger than 40 years old. Breast cancer is less common among women in this age group. In 2003, less than 5 percent of all breast cancer cases occurred in women under age However, women who are diagnosed at a younger age are more likely to have a mutated BRCA1 or BRCA2 gene. These genes are important in the development of breast cancer, and women who carry defects on either of these genes are at greater risk of developing breast and ovarian cancer. If a woman carries a defective BRCA1 or BRCA2 gene, she may have a 35 to 85 percent chance of developing breast cancer in her lifetime. 2 In addition, having a mother, daughter or sister who has or had breast cancer also increases a young woman s risk of developing breast cancer. So while the risk of breast cancer is generally much lower for younger women, there is still a high risk for some. If you are concerned about your genetic risk, ask your doctor to refer you to a genetic counselor or a breast cancer specialist who will discuss in detail what your own risk may be and can talk about genetic testing and prevention options. Diagnosing breast cancer in younger women can be more difficult because their breast tissue is often thicker than the breast tissue of older women. By the time a lump can be felt in a younger woman, it is often large enough and advanced enough to lower her chances of survival. In addition, the cancer may be more aggressive and less responsive to hormone therapies. Delay of diagnosis in younger women is a special problem because it is so rare for a younger woman to get the disease. As a result, younger women are often told that a lump is just a cyst and to wait and watch it. Tell your doctor if you notice a change in either of your breasts, and think about getting a second opinion if you are not satisfied with his or her advice. A helpful tip for younger women It is important for younger women to become familiar with how their breasts look and feel through monthly breast self-exams (BSE) beginning by age 20. The best time to perform BSE is just as your monthly period ends. During BSE, if you discover a lump or notice any changes in your breasts, see your health care provider for a clinical breast exam. (For step-bystep breast self-exam instructions, go to Clinical breast exams are recommended for all women beginning at the age of 20, and thereafter, every 3 years, or every year if you are age 40 or over. If you are under age 40 with a family history or other risk factors you should talk with your health care provider about risk assessment, when to start getting mammograms and how often to have them. If done regularly, these exams can help to detect any problems early, and may increase the chances of survival. 39

48 Resources Young women with breast cancer may have special concerns that are different from those of older women. Finding the right support group can bring strength and friendship through sharing your thoughts and feelings. Many larger hospitals have or can refer you to cancer support groups in your area. Or you can contact these organizations for more information: American Cancer Society ACS Fertile Hope HOPE The Susan G. Komen Breast Cancer Foundation I M AWARE, for these booklets: What s happening to me? What s happening to the woman I love? What s happening to mom? What s happening to the woman we love? Y-ME National Breast Cancer Organization Young Survival Coalition Related fact sheets in this series: For mothers with breast cancer If you are a mother of young children and you have breast cancer, it can be hard to tell your children what you are going through. Remember that children can pick up on their parents feelings, and may be confused if you do not talk to them about your condition. Telling your children in simple terms about your cancer and sharing some of your feelings will help them understand the changes around them. Every mother is different, and your parenting style may be different from someone else s. But in your own way, try to share with your children what you are going through. Also, trying to maintain your usual routine may help your children adjust to the changes. Talking about your breast cancer can help both you and your children be supportive and cope with the disease. 1 American Cancer Society, Breast Cancer Facts & Figures American Cancer Society, Cancer Facts & Figures Hearing the pitterpatter of little feet? Some treatments for breast cancer can effect a woman s ability to have children. If you think you would like to become a parent after breast cancer, talk with your doctor about your options. In the past, doctors would advise women who have had breast cancer not to have children. Doctors thought that the added estrogen and progesterone during pregnancy may promote the growth of breast cancer. Yet, there are no studies that have clearly shown a link between pregnancy and recurrence of breast cancer. Today, many doctors say it is fine for women who are free of cancer and not undergoing treatment to become pregnant. Some suggest waiting 2 to 5 years after diagnosis the most likely period of recurrence to assure that breast cancer has not returned. Some women around age 40 who are closer to menopause find that after chemotherapy, their periods do not return. For those who are in their 20s and 30s and who still have their periods after chemotherapy, the ability to have children may be unaffected. If you are hoping to have children after cancer treatment, talk with your doctor about your options. genetics & breast cancer talking with your children when you discover a lump 40 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

49 breast cancer facts What you need to know Your best defense How can I prevent breast cancer? The causes of breast cancer are not fully understood, although it is clear that a woman s lifetime exposure to estrogen and her age at the time of her first childbirth play an important role. Because no one knows exactly what causes breast cancer, there are no sure ways to prevent it. There are steps that every woman can take that may make developing breast cancer less likely. These include eating healthy, exercising regularly and limiting the amount of alcohol you drink. Leading a healthy lifestyle will not eliminate your chance of getting breast cancer, but it may help reduce your risk. For women at higher risk, the antiestrogen drug tamoxifen can also help to reduce the risk of developing breast cancer. Who gets breast cancer? Anyone can get breast cancer. For example, did you know the older a woman is, the more likely she is to get breast cancer? white women are more likely to get breast cancer than women of any other racial or ethnic group? They also have a better chance of survival, primarily because their cancer is usually detected earlier. African American women are more likely to die from breast cancer than white women. men can get breast cancer too, although it is rare. Less than one of every 100 cases of breast cancer in the U.S. occurs in men. in 2005, it is estimated that men will account for 1,690 cases of breast cancer. 1 How do I know if I am at risk for breast cancer? All women are at risk for breast cancer. Known risk factors like having a family history of breast cancer, starting menopause after age 55 or never having children account for only a small number of new breast cancer cases every year. That means that the majority of women who get breast cancer have no known risk factors except being a woman and getting older. I have a family history of breast cancer. Does that mean I ll develop breast cancer, too? The best way to detect breast cancer in its earliest stages is to routinely check your breasts for signs and symptoms of the disease. There are three basic methods: Breast self-exam (BSE) involves two main steps, looking at and feeling your breasts for any change from normal. If you notice any change in the normal look or feel of your breasts, see your health care provider. All women should perform monthly BSE by age 20. BSE should be done once a month, a few days after the last day of your period. If you no longer have periods, do BSE on the same day each month. At your next appointment, ask your health care provider to show you the steps for BSE. (For step-by-step BSE instructions, go to or call I M AWARE ( ) to request a free BSE card.) Clinical breast exam is performed by a health care provider who carefully checks your breasts and underarm areas for any lumps or changes that may be present. Many women have a clinical breast exam performed when they get their Pap test. Women should have a clinical breast exam at least every 3 years between the ages of 20 and 39 and every year after 40. Mammograms are X-ray pictures of the breast. They can detect breast cancer in its earliest stages, even before a lump can be felt. All women 40 and older should have a mammogram every year. If you are younger than 40 with either a family history of breast cancer or other concerns about personal risk, talk with your health care provider about risk assessment, when to start getting mammograms and how often to have them. Not necessarily. Just because other family members have had breast cancer doesn t mean that their disease was inherited. Only about 5 to 10 percent of all breast cancers occur because of inherited mutations. 2 41

50 If I am diagnosed with breast cancer, what are my chances of surviving? In general, pretty good. The 5-year survival rate for all women diagnosed with breast cancer is 87 percent. 2 This means that 87 out of every 100 women with breast cancer will survive without a recurrence for at least five years. Most will live a full life and never have a recurrence. Your chances of surviving are better if the cancer is detected early, before it spreads to other parts of your body. In fact, when breast cancer is confined to the breast, the 5-year survival rate is over 95 percent. 2 That is why it is so important to take steps to detect breast cancer in its earliest stages. 1 American Cancer Society, Cancer Facts & Figures American Cancer Society, Breast Cancer Facts & Figures Are you at risk? Most women have more than one known risk factor for developing breast cancer, yet will never get the disease. Some risk factors are things that you do not have any control over, while others can be changed by making changes in your lifestyle (see list below). What is the most important risk factor? Simply being a woman. But remember, there is no one cause of breast cancer. If you are concerned about your breast cancer risk, discuss your breast health needs with your doctor. Known and probable risk factors: being a woman getting older having a personal history of breast or ovarian cancer having a family history of breast cancer or ovarian cancer having a previous biopsy showing hyperplasia or carcinoma in situ having your first period before age 12 starting menopause after age 55 never having children having your first child after age 30 having a mutation in the BRCA1 or BRCA2 breast cancer genes drinking more than 1 alcoholic drink per day being overweight after menopause or gaining weight as an adult currently or recently using combined estrogen and progesterone hormone replacement therapy (HRT) Related fact sheets in this series: breast cancer risk factors racial & ethnic differences healthy living breast cancer in men 42 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

51 what is breast cancer? How does breast cancer grow and spread? To continue growing, malignant breast tumors need to be fed. They get nourishment by developing new blood vessels in a process called angiogenesis. The new blood vessels supply the tumor with nutrients that promote growth. As the malignant breast tumor grows, it can expand into nearby tissue. This process is called invasion. Cells can also break away from the primary, or main, tumor and spread to other parts of the body. The cells spread by traveling through the blood stream and lymphatic system. This process is called metastasis. When malignant breast cells appear in a new location, they begin to divide and grow out of control again as they create another tumor. Even though the new tumor is growing in another part of the body, it is still called breast cancer. The most common locations of breast cancer metastases are the lymph nodes, liver, brain, bones and lungs. Breast cancer growth The light circles represent normal breast cells and the dark-shaded circles represent cancerous breast cells. As the cancerous cells grow and multiply, they develop into a malignant tumor within the breast. Every day, cells in your body divide, grow and die. Most of the time cells divide and grow in an orderly manner. But sometimes cells grow out of control. This uncontrolled growth of cells forms a mass or lump called a tumor. Tumors are either benign or malignant. BENIGN [BEE-NINE] TUMORS Benign tumors are not cancerous. But left untreated, some can pose a health risk, so they are often removed. When these tumors are removed, they typically do not reappear. Most importantly, the cells of a benign tumor do not spread to other parts of the body or invade nearby tissue. MALIGNANT [MA-LIG-NANT] (CANCEROUS) TUMORS Malignant tumors are made of abnormal cells. Malignant tumor cells can invade nearby tissue and spread to other parts of the body. A malignant tumor that develops in the breast is called breast cancer. Why does breast cancer grow? We all have genes that control the way our cells divide and grow. When these genes do not work like they should, a genetic error, or mutation, has occurred. Mutations may be inherited or spontaneous. Inherited mutations are ones you were born with an abnormal gene that one of your parents passed on to you at birth. Inherited mutations of specific genes, such as the BRCA1 and BRCA2 genes, increase a woman s risk of developing breast cancer. Spontaneous mutations occur within your body during your lifetime. The actual cause or causes of mutations still remains unknown. Researchers have identified two types of genes that are important to cell growth. Errors in these genes turn normal cells into cancerous ones. The table on the next page provides a description of each. 43

52 Type of gene Oncogene Tumor suppressor gene How it should work It turns on, or starts normal cell division and growth. It turns off, or stops normal cell division and growth. How it works when damaged The gene does not stop when it should and cell growth continues out of control. The gene does not work and cell growth continues out of control. But remember... Resources The Susan G. Komen Breast Cancer Foundation I M AWARE National Cancer Institute CANCER American Cancer Society ACS Cells may be growing out of control before any symptoms of the disease appear. That is why breast screening to find any early changes is so important. The sooner a problem is found, the better a woman s chances are for survival. It is important for all women to do breast self-exams once every month, and to have clinical breast exams done by a health care provider at least every 3 years beginning by age 20 and every year after age 40. Experts recommend that women 40 years and older also have a mammogram every year. If you have a history of breast cancer in your family, talk with your doctor about risk assessment, when to start getting mammograms and how often to have them. If your mother or sister had breast cancer before menopause, you may need to start getting mammograms and annual clinical breast exams before age 40. Related fact sheets in this series: types of breast cancer genetics & breast cancer ductal carcinoma in situ 44 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

53 types of breast cancer What are the types of breast cancer? Most breast cancer occurs in the milk ducts of the breast the tubes that carry breast milk to the nipple. This breast cancer is called ductal carcinoma. A second, but less common form of breast cancer occurs in the lobules where breast milk is made. This breast cancer is called lobular carcinoma. Less common forms of breast cancer are inflammatory, medullary, mucinous, tubular and Paget s disease. Breast cancers are also classified as in situ [in SY-too] or invasive. In situ cancer In situ means in place. Ductal and lobular carcinomas that have not spread outside the duct or lobule are called in situ cancers. They are often called pre-cancerous conditions because they can either develop into or raise the risk of getting invasive cancer. Invasive cancer When ductal or lobular carcinomas spread into surrounding breast tissue, the cancer is called invasive. Invasive breast cancer is not the same as metastasis. Metastasis occurs when breast cancer cells break away from the primary tumor and spread to other organs of the body through either the blood stream or the lymphatic system. Most breast cancers can be found early if screening guidelines are followed properly. Early detection usually means that the breast cancer has not had time to metastasize, or spread, to other organs. Why does it matter? The type, size and spread of breast cancer are all important characteristics in determining a woman s stage of breast cancer. By knowing what stage a woman s cancer is in, her doctor can recommend which treatment is most appropriate for her. The next page describes the five main stages of breast cancer. What is meant by the size and spread of breast cancer? In addition to the type of breast cancer a woman may have ductal, lobular, in situ, invasive doctors also look at other growth characteristics such as the size and spread of the tumor. Size In general, the smaller the tumor, the better the chance for successful treatment. Doctors define small as less than 2 centimeters or about three-fourths of an inch. Spread Doctors describe the spread of breast cancer as either local, regional or distant. Local means that the breast cancer is confined within the breast. Even if breast cancer is found in several different locations in the breast, it is still considered local. Regional means that the breast cancer has spread to the lymph nodes, mainly those in the underarm (the axillary nodes). Distant means that the breast cancer has spread to other parts of the body (metastasized). 45

54 Breast cancer staging This scale is used by doctors to rate the stage of advancement of a woman s breast cancer. The stages are 0, I, II, III and IV. The higher the stage, the more serious the cancer. Stage depends on: the size of the tumor in the breast (T); if cancer has spread to the axillary lymph nodes (N); and any sign of metastasis (M). This is called TNM staging. The table below gives a summary of TNM staging. Stage 0 (zero) refers to in situ cancer. Stages I-IV are all invasive cancer. Stage (T) Tumor size (N) Axillary lymph nodes (M) Metastasis 0 I II III IV tiny cluster of cancer cells in a breast duct (in situ); no invasive cancer seen up to 2 cm smaller than 2 cm between 2 and 5 cm larger than 5 cm any size larger than 5 cm any size, but cells have spread to skin or chest wall any size any size no spread no spread has spread to axillary lymph nodes may or may not have spread to the axillary lymph nodes no spread has spread to the axillary lymph nodes so that the nodes become attached to each other has spread to axillary lymph nodes may or may not have spread to the axillary lymph nodes has spread to lymph nodes along breastbone or above or below collarbone may or may not have spread to the axillary lymph nodes none none none none none none none none none has spread to other organs of the body Related fact sheets in this series: what is breast cancer? prognostic factors ductal carcinoma in situ carcinoma in situ inflammatory breast cancer metastatic breast cancer 46 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

55 medical vocabulary Adjuvant therapy - cancer treatment, such as chemotherapy or hormone therapy, used in addition to surgery Alternative therapy - any non-traditional cancer treatment used instead of a traditional medical cancer treatment Axillary lymph nodes - glands in the underarm that filter the lymph fluid Benign - not cancerous; does not invade tissue or spread to other parts of the body Biopsy - removal of tissue which is then examined for cancer cells BRCA1 & BRCA2 - inherited human genes which, when present in a mutated (altered) form, increase a woman s risk of developing breast and ovarian cancer Breast conserving surgery (lumpectomy) - surgery that removes only part of the breast the breast cancer and some normal tissue around it Carcinoma in situ (CIS) - cancer cells that have not left the area where they started and have not spread to surrounding breast tissue or other parts of the body Chemotherapy - the use of drugs to treat cancer by destroying cancer cells Clinical breast exam - inspection (looking) and palpation (feeling) of the breasts and underarm areas by a health care provider to check for any changes or lumps Clinical trials - research studies done with actual patients to test the safety and effectiveness of new treatments or diagnostic procedures Complementary therapy - any non-traditional cancer treatment that is used together with traditional medical cancer treatment Cyclical breast pain - tenderness that varies throughout the menstrual cycle, is influenced by hormones and is related to menstrual periods Estrogen - a hormone produced primarily by the ovaries that aids in developing female sex organs and in regulating monthly menstrual cycles Fibrocystic breast changes - noncancerous breast condition that sometimes results in painful cysts or lumpy breasts Hormone (endocrine) therapy - treatment that works by interfering with the effects of hormones on cancer growth Invasive cancer - the spread of cancer from the location where it started into surrounding tissue There are so many new words to learn after a diagnosis of breast cancer. This fact sheet contains some of those words so that you can refer to it whenever you do not understand something. You may want to take it to your medical appointments or use it to look up words you do not understand when reading about breast cancer. 47

56 Lymphedema - swelling of the arm caused by removal of the axillary lymph nodes or by radiation therapy Malignant - cancerous Mammogram - an X-ray of the breast Mastectomy - surgery in which the entire breast is removed Metastasis - the spread of cancer from the location where it started to other parts of the body Neoadjuvant therapy - chemo-therapy or hormone therapy given before surgery to reduce the size of a tumor Oncologist - a doctor who specializes in treating patients with cancer Palliative care - the combination of symptom and pain management therapies intended to comfort and support those with a life-threatening illness Progesterone - a hormone that is released by the ovaries during every menstrual cycle and that helps prepare a woman s body for pregnancy and breastfeeding Progestin - a synthetic progesteronelike ingredient found in HRT drugs Prognosis - the expected or probable outcome or course of a disease Prosthesis (breast) - an artificial breast form that can be worn under clothing after a mastectomy Radiation therapy (radiotherapy) - treatment using high energy X-rays to destroy cancer cells in the exposed area Receptor - a specific location in a cancer cell that allows hormones to attach to it in order to promote growth Reconstructive surgery - a procedure using plastic surgery to recreate a breast Recurrence - a return of cancer in the same site or another location Risk factors - factors that affect a woman s chances of getting breast cancer Stages of cancer - a numbering system (from 0 to 4) that tells doctors how advanced a specific breast cancer may be in order to determine prognosis and appropriate treatment options Tumor - an abnormal growth or mass of tissue which may be benign (noncancerous) or malignant (cancerous) 48 This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05

57 breast health resources ORGANIZATIONS The Susan G. Komen Breast Cancer Foundation fights to eradicate breast cancer by advancing research, education, screening and treatment I M AWARE, American Cancer Society provides information and resources; the Reach to Recovery program has trained breast cancer survivors who visit newly diagnosed post-surgical patients ACS 2345, Association of Community Cancer Centers provides information on cancer treatments that health insurance should cover , Facing Our Risk of Cancer Empowered, Inc. (FORCE) provides information for women whose family history or genetic status puts them at high risk of ovarian and/or breast cancer , Fertile Hope provides reproductive information, support and hope to cancer patients whose treatments present the risk of infertility HOPE, Food and Drug Administration Breast Implant Information Line answers questions and registers complaints about breast implants , indexbip.html Mary-Helen Mautner Project for Lesbians with Cancer provides education, support and other services to lesbians with cancer , National Breast Cancer Coalition grassroots organization with a mission to eradicate breast cancer through action and advocacy , National Cancer Institute s Cancer Information Service provides information and resources for patients, the public and health care providers CANCER, National Center for Complementary and Alternative Medicine at the National Institutes of Health provides information on complementary and alternative health care , Sisters Network, Inc. provides outreach and education on the impact of breast cancer in the African American community , Young Survival Coalition provides information on breast cancer in young women , SUPPORT GROUPS Y-ME National Breast Cancer Organization includes trained volunteers, all of whom are breast cancer survivors (English) or (Spanish), CancerCare Online offers online support groups for people who have cancer as well as their partners and family members HOPE, PUBLICATIONS All of these books and many more can be obtained online, at libraries or bookstores. Be a Survivor: Your Guide to Breast Cancer Treatment by Vladimir Lange (Lange Productions). ISBN: The Breast Cancer Survival Manual by John Link, M.D (Henry Holt and Company). ISBN: If you need more resources Today more than ever before, a wealth of information on breast cancer is available to women and their families. This fact sheet lists some of the best resources to help you. The organizations were selected because they have credible information on many different aspects of breast cancer. Most can also send you information you need, often free of charge. If they cannot help you, they will direct you to other organizations or resources. 49

58 Breast Cancer: The Complete Guide by Yashar Hirshaut and Peter Pressman (Bantam Books). ISBN: Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer by Michael Lerner (MIT Press). ISBN: Dr. Susan Love s Breast Book, 3rd ed., by Susan M. Love with Karen Lindsey (Addison-Wesley). ISBN: X Helping Your Mate Face Breast Cancer: Tips for Becoming an Effective Support Partner by J.C. Kneece (EduCare Publishing). ISBN: Living Beyond Breast Cancer: A Survivor s Guide for When Treatment Ends and the Rest of Your Life Begins by Marisa C. Weiss and Ellen Weiss (Times Books). ISBN: Mayo Clinic Guide to Women s Cancers by Lynn C. Hartmann and Charles L. Loprinzi (Mayo Clinic Health Information). ISBN: X When a Parent has Cancer: A Guide to Caring for Your Children by W.S. Harpham, M.D (Harper Collins). A children s book is in the back of this book. ISBN: When Life Becomes Precious: A Guide for Loved Ones and Friends of Cancer Patients by E.N. Babcock (Bantam Books). ISBN: A Woman s Decision: Breast Care, Treatment and Reconstruction by Karen Berger and John Bostwick (Quality Medical Publishing). ISBN: THE INTERNET For many women, the Internet is an invaluable source of breast cancer information. If you use the Web for this purpose, make sure the information you are getting is reliable and trustworthy. Is the source reputable? Is the source affiliated with a university, health foundation or government health agency? Before you take any health actions based on something you find on the Web, check it out with your health care provider. Get at least one other opinion, then decide what is best for you. Below are a few credible sources that you can go to for information. This is in addition to the previously listed organizations. CenterWatch Clinical Trials Listing Service provides information on clinical trials and specific studies currently being conducted. HealthWorld Online provides information on all aspects of health, disease, prevention and wellness. National Lymphedema Network provides information for dealing with lymphedema. National Cancer Institute Cancer Fact Sheets provides an index of all the National Cancer Institute Cancer Fact Sheets. University of Pennsylvania Cancer Center has cancer specialists helping cancer patients, families, health care professionals and the general public get accurate cancer-related information This list of resources is made available solely as a suggested resource. Please note that it is not a complete listing of materials or information available on breast health and breast cancer. This information is not meant to be used for self-diagnosis or to replace the services of a medical professional. Further, the Susan G. Komen Breast Cancer Foundation does not endorse, recommend or make any warranties or representations regarding the accuracy, completeness, timeliness, quality or non-infringement of any of the materials, products or information provided by the organizations referred to in this list. Developed in collaboration with the Health Communication Research Laboratory at Saint Louis University The Susan G. Komen Breast Cancer Foundation. Item No /05