METASTATIC BREAST CANCER

Transcription

1 Living with A SHARED DECISION-MAKING PROGRAM METASTATIC BREAST CANCER Making the journey your own BCM001B V06

2 Living with METASTATIC BREAST CANCER Making the journey your own This program content, including this booklet and the accompanying video, is copyright protected by the Informed Medical Decisions Foundation and/or Health Dialog, exclusive distributor. You may not copy, distribute, broadcast, transmit, or perform or display this program for a fee. You may not modify the contents of this program without permission from the Foundation or Health Dialog. You may not remove or deface any labels or notices affixed to the program package. Health Dialog Services Corporation All rights reserved. BCM001B V06

3 2 Health Dialog

4 Contents About This Booklet and Video About Shared Decision-Making Programs... 4 Is This Program Right for You?... 6 Coping with Metastatic Breast Cancer Coping with Your Diagnosis... 7 What You Need to Know... 8 Choosing Treatments Goals of Treatment Your Role in Choosing Treatments Living with Metastatic Breast Cancer Living with Your Disease Planning Ahead Treatments for Metastatic Breast Cancer Types of Treatment: Overview Hormone Therapy Chemotherapy Biological Therapy Complementary and Alternative Medicine Clinical Trials Definitions of Medical Terms For More Information Books and CD About Coping with Cancer Research Publications Used to Write This Booklet Contents 3

5 About Shared Decision-Making Programs In this chapter: What Is a Shared Decision-Making Program? How Can This Program Help You? Are the Options Discussed in This Program Appropriate for You? Who Made This Program? How Can You Know If the Information in This Program Is Up-to-Date? Who Are the Women in This Program? What Is a Shared Decision-Making Program? You need good information to make good decisions about your health. Shared Decision-Making programs include videos and booklets that give you up-to-date facts about health conditions and the pros and cons of different healthcare choices. Shared Decision-Making programs do not recommend treatment, give medical advice, or diagnose medical problems. How Can This Program Help You? The information in this program can help you prepare to talk with your doctor so you are ready to ask questions and discuss how you feel about your healthcare options. Then you and your doctor can talk about which option may be best for you and make a decision together a shared decision. You might be wondering, is this information right for me? Where did it come from? How can I use it? In this section, you ll find answers to these and other questions you may have. Are the Options Discussed in This Program Appropriate for You? Some of the options in this booklet and video may not be appropriate for your individual medical situation. Talk with your doctor about how the information in this program relates to your specific condition. Note that Health Dialog does not approve or authorize care, treatments, or tests. If you have questions about whether your health plan covers a particular treatment, talk with your health plan or your doctor. 4 Health Dialog

6 Who Made This Program? The information in this program is based on the latest medical research. The Informed Medical Decisions Foundation carefully reviewed all the information in this program to make sure it is accurate and reliable. Health Dialog produced this program booklet and video. Neither the Foundation nor Health Dialog profits from recommending any of the treatments in this program. How Can You Know If the Information in This Program Is Up-to-Date? All videos and booklets are reviewed regularly and updated as necessary. If you received this program some time ago, or if someone passed it along to you, don t use it. The information may be out-of-date. To make sure you have the most recent program, visit or call Please use the product number located on the video label or booklet when you contact Health Dialog about a program. Who Are the Women in This Program? The women who appear in the video are real people, not actors. They are also quoted in this booklet. These women volunteered to share their stories about how they decided to deal with metastatic breast cancer. They received a small fee for their time. They do not profit from recommending any treatment or self-care strategy. The women in this program were chosen because their stories show many of the reasons people have for making different treatment choices. They were also chosen because they had both good and bad results after treatment. But the mix of women having good and bad results in this program is not the same as the mix of good and bad treatment results in the general population. The limits on the length of the video made it impossible to include enough women to represent the actual proportion of good to bad treatment results. About Shared Decision-Making Programs 5

7 Is This Program Right for You? The information in this booklet and accompanying video is for women who have been diagnosed with metastatic breast cancer (breast cancer that has spread to other parts of the body; also called Stage IV breast cancer). The purpose of this program is to offer information on: How to keep a positive outlook How to get the best care from your medical team How to make decisions about your treatment. Note: Italics are used in this booklet to emphasize key words or to identify medical terms. See the Definitions of Medical Terms section at the end of the booklet for full descriptions of medical terms that are italicized. To help you live a full life when the future is uncertain, this program explains metastatic breast cancer, its treatment options, and what you can expect over time. It also provides tips for: Developing a good relationship with your medical team and participating in your treatment decisions Setting both short-term and long-term goals Planning for the future. 6 Health Dialog

8 Coping with Your Diagnosis Hearing that you have metastatic breast cancer triggers intense emotions. You might feel sad, angry, disappointed, worried, or depressed. Many women say they feel very alone. Over time, it is likely your feelings and emotions will change. While metastatic breast cancer is very much a physical illness, many women say the biggest challenges are mental and emotional. Because this diagnosis affects all parts of your life family, friends, work, play, and finances it means coping with many changes. that requires ongoing treatment and adjustments in lifestyle. Some women want to dramatically change their lives; others want to go on exactly the same way. I felt like I was just thrown out into the middle of an ocean. I didn t have any idea of what was going to happen to me next. Willa The diagnosis certainly has brought death right in front of my face. And it s something I didn t really think about before. Haruko Each woman copes with her diagnosis in her own way. Coping styles vary like personalities. Some women deal with the diagnosis by telling everyone they know; others tell only their closest friend. Some see themselves as battling cancer. Other women see it as a chronic illness, like heart disease or diabetes, Coping with Your Diagnosis 7

9 What You Need to Know In this chapter: What Happens When Breast Cancer Spreads? Goal of Treatment How Your Cancer Might Respond to Treatment What Do You Want to Know About Possible Treatment Results? What Happens When Breast Cancer Spreads? Now that your breast cancer has spread, you may have new questions. Your cancer started in the breast. At the time of your first diagnosis, some cancer cells may have traveled to the lymph nodes under the arm. The initial treatments women get when they are first diagnosed with breast cancer target cancer cells in different ways: Surgery removes the cancer cells from the breast (or the entire breast is removed) Radiation therapy aims to destroy any cancer cells left in the breast or breast area after surgery Hormone therapy may prevent cancer cells from growing again Chemotherapy kills cancer cells that may have traveled to other parts of the body. After those treatments, breast cancer can come back in either the breast area or in other parts of the body. Where it comes back affects how it is treated. The table on the next page describes how breast cancer is treated depending on where it comes back. Many of the decisions about the treatment of metastatic breast cancer have to be made as time goes on. It s impossible to outline the long-term detailed plan in advance because much depends on how someone responds. Debu Tripathy, MD 8 Health Dialog

10 When Breast Cancer Comes Back Type of Recurrence Local/Regional Metastasis Location How It Happens Treatment Goal of Treatment In breast or nearby area Some cancer cells survive initial treatment and grow in place Similar to initial breast cancer treatments To completely eliminate cancer cells In different parts of the body Some cancer cells survive initial treatment, travel in bloodstream or lymph system (part of body that helps fight infection), and grow in lungs, bones, or other organs Different from initial breast cancer treatments To slow or stop growth of cancer cells What You Need to Know 9

11 Metastases or distant recurrences are still called breast cancer because they have the same type of cells as the cancer that started in the breast. The new growths cause different symptoms depending on where they are located. Common Symptoms of Breast Cancer Metastasis Location Bone Lung Liver Brain Symptoms Pain Difficulty breathing Stomach upset or discomfort Difficulty doing things controlled by affected area of brain (such as a tumor in language center affecting speech), difficulty thinking clearly, or sometimes having seizures Goal of Treatment There are many treatment options for breast cancer that has spread. However, at this time, no treatments can make breast cancer metastases go away and stay away for good. When metastases slow or stop growing, this is called a response to treatment. Range of Treatments and Results Breast cancer treatment is tailored to each woman, and therapies may differ depending upon a woman s specific tumor type and hormone sensitivity. Some women with metastatic breast cancer require treatments that cause only minor side effects and have responses that last for many years. They might even live a normal lifespan and die of something other than cancer. That might be a best-case scenario. On the other hand, some women have aggressive cancers that keep growing and spreading even after they use several chemotherapy drugs or other treatments that cause a lot of side effects. Women in this possible worst-case situation might live only a few months after being diagnosed with metastatic breast cancer. Also, women have a wide range of responses to treatment from very good to very bad. Most women s experience with metastatic breast cancer lies somewhere in between the worst-case and best-case examples. A typical woman may have a response with her first treatment. During this time, she may have only a few minor symptoms and be able to 10 Health Dialog

12 do most of her usual activities. Eventually, however, her cancer may start to grow again. She may then try another treatment that produces another response. Over time, she may have several different treatments, but as the cancer spreads, her symptoms will usually get worse. She may have to stop doing many or all of her usual activities. The side effects of cancer treatments may become more difficult to tolerate over time. At some point, she may decide to focus on treatments that relieve her symptoms but that may not actively treat the cancer. Eventually, she may choose hospice care. What to Expect If you want to get an idea of what you might expect, it may help to ask your doctor to give you a best-case, a worst-case, and a typical scenario. Ask, What s the best I might expect? What s the worst? And what s most likely? It is difficult to predict how your particular cancer will respond to treatments. In general, most women with metastatic breast cancer can expect that: Initial treatment(s) will produce some degree of response Over time, the length of time that responses last will grow shorter As cancer spreads, symptoms will get worse and begin to interfere with usual activities Eventually, the goals of treatment may change, with less focus on trying to control the growth of cancer to more focus on relieving symptoms. How Your Cancer Might Respond to Treatment How long will I live? is the first question some women ask their doctors. Other women never want to know. The fact is, no one can answer the question accurately. It s impossible to predict exactly What You Need to Know 11

13 how long a treatment will keep cancer from growing. That s because every tumor is different, and response to treatment varies widely. Even so, doctors can estimate what might happen to you if they know certain things about your cancer, as shown in the table on page 13. What Do You Want to Know About Possible Treatment Results? Doctors can tell you results from studies on large groups of women with certain kinds of cancer, but not if you will have similar results. Doctors can tell you about the timing of treatments, what might work better for women with your type of cancer and whether changing the timing of treatments makes a difference in how well they might work. Some women want to know the numbers or statistics about how long a treatment might work. This helps them to decide what s best for them and to get themselves and their family prepared. Other women don t want to know these numbers. Tell your doctor which details you want to know, and which details you prefer not to know. Explore your options do some planning ahead but stay flexible; things could go better (or worse) than you expect, so plans may need to adjust over time. Ask your doctor if there are different treatments with the same effectiveness, and how the side effects compare. Consider whether these side effects will prevent you from doing the things you like to do and allow you to enjoy life. When I was first diagnosed, the only thing I wanted to know was statistics. How many statistics? What percentage of people live? Mel 12 Health Dialog

14 Factors That Influence How Metastatic Cancer Responds to Treatment Factor Time: How much time passed between your first diagnosis of breast cancer and your diagnosis of metastatic cancer Numbers: How many different places the tumors are growing Location: Where tumors are growing Tumor Type Treatment You Had: How much medical treatment (hormone therapy and chemotherapy) you had in the past for your breast cancer Overall Health: Whether you are in good overall health, aside from your breast cancer Influence The longer, the better The fewer, the better Tumors in bone cause less health problems Tumors in organs (lungs, liver, brain) can cause more health problems Some therapies may be more effective for certain types of tumors or for tumors with a particular hormone sensitivity Fewer treatments are better. Cancer cells that survive initial chemotherapy or hormone therapy can be harder to control The better your overall health, the better your body can deal with the stress of cancer and its treatments What You Need to Know 13

15 Goals of Treatment In this chapter: Controlling Cancer (Disease-Modifying Treatments) Reducing Symptoms and Side Effects (Palliative Care) Relieving Symptoms Only (Hospice Care) When treating breast cancer that has spread, you and your doctor will consider treatment goals and approaches that are most suited to your situation. Controlling Cancer (Disease-Modifying Treatments) Treatment for metastatic breast cancer focuses on helping you live as well as possible for as long as possible. Since there are no treatments that will cure metastatic breast cancer, the primary goal is to control the disease. To control cancer, doctors use disease-modifying treatments. Sometimes these treatments make tumors stop growing, grow more slowly, or shrink, which can also help relieve symptoms caused by tumors. The main types of disease-modifying treatments for metastatic breast cancer are: Hormone therapy Chemotherapy Biological therapy Radiation therapy and/or surgery (in some cases). Treatment usually starts with the type of treatment that is most likely to control the cancer while causing the least side effects. Balancing Treatment Goals Control the Disease Goal is to: Control growth of cancer cells (called response). When this occurs, tumors may stop growing, grow more slowly, or shrink Relieve Symptoms and Side Effects Goal is to: Relieve symptoms caused by the cancer (for example, relieve pain caused by tumors) Relieve side effects of treatments (such as reduce nausea caused by chemotherapy) 14 Health Dialog

16 Normally, a treatment continues for as long as it keeps the cancer under control. If tumors start to grow again, treatment is switched to another type that works differently. Over time, most women with metastatic breast cancer use several different kinds of disease-modifying treatments. Unfortunately, each treatment that follows usually has a shorter response and more side effects than the one before although there are always exceptions to that pattern. Reducing Symptoms and Side Effects (Palliative Care) Palliative care can help relieve symptoms and minimize treatment side effects. Palliative care focuses on quality of life helping you feel as well as possible so you can do as many of your usual activities as possible. The goals of palliative care include: Reducing pain Improving breathing or helping a person avoid feeling out of breath Controlling nausea or vomiting, constipation, and other symptoms Easing anxiety or depression Helping with communication between your healthcare team and you and your family Supporting you and your family as you weigh the benefits and burdens of potential therapies and make decisions Helping you complete advance care planning, such as identifying a healthcare proxy. You can get palliative care at any time during your illness. You can have both disease-modifying cancer treatments and palliative care at the same time. Some cancer treatments are considered palliative when they are primarily used to help relieve pain or other symptoms, such as nausea or shortness of breath. Palliative treatments for metastatic breast cancer may include pills or injections, radiation therapy, and sometimes surgery. Goals of Treatment 15

17 Because there s usually more than one treatment option, it s important to let your doctor know about things that could make treatment easier for you. For example, if radiation is recommended and it is difficult to get to daily treatments, you may be able to get radiation at higher doses for a shorter period of time so there are fewer trips to the radiation facility. Sometimes, people with cancer think that pain and depression are an unavoidable part of the disease. This is not the case. Both pain and depression can be treated effectively. Good cancer care providers are as concerned about making you comfortable as they are about controlling your cancer. Choosing how to treat pain is often separate from deciding how to control the cancer. You can get treatment for pain at any time during your illness. You do not need to be in hospice care to get pain relief. Relieving Symptoms Only (Hospice Care) Another option for some women with metastatic breast cancer is to focus on treatments that provide comfort, called hospice care. Once a person starts hospice care, they usually: Stop disease-modifying treatments such as chemotherapy Stop having medical tests or scans to check the growth of tumors Make use of more palliative care resources that are available. Like palliative care, hospice care provides treatments to manage symptoms and provide pain relief. In addition, hospice care providers are specially trained to provide support emotional, practical, and even spiritual care for people with incurable illness, as well as for their families. Hospice care services can include: Providing medicines and therapies Helping people take care of themselves Helping people and their families deal with what is happening. Different hospice programs offer different types of care, and in different locations. All programs have to offer the services required 16 Health Dialog

18 by the federal government, but some hospice programs and insurance providers offer additional services. With hospice, you can choose from different providers and programs, and you can choose whether you want to receive care at home, in the hospital, or at a nursing facility. Some people think that choosing hospice means a person is giving up. Choosing hospice care does not mean giving up. It means deciding to focus on quality of life, rather than using limited physical and emotional resources to try increasingly less effective disease-modifying treatments. Goals of Treatment 17

19 Your Role in Choosing Treatments In this chapter: Medical Issues Personal Issues Focus of Treatment When to Stop Disease-Modifying Treatment You and your doctor will consider several factors when deciding which treatments will be best in your personal situation, including: Medical issues Personal issues Focus of treatment. Medical Issues The first step in choosing treatments for metastatic breast cancer is to identify the characteristics of your particular cancer. Your medical team will use that information to suggest which class of treatment is likely to work best, as shown in the table on the right. Major Classes of Treatment for Metastatic Breast Cancer Class Hormone Therapy Chemotherapy Biological Therapy How It Works Prevents cancer cells from using estrogen or prevents body from producing estrogen. Only used for hormone-receptor-positive cancers. Kills fast-growing cells (like cancer cells) as they divide and multiply. Helps the immune system fight cancer or keep it from spreading. Only works on women who have cancer cells with certain characteristics. Usually, you continue treatment as long as: Tumors are shrinking or are stable Side effects are reasonable for you to handle. 18 Health Dialog

20 You switch to another treatment if: Cancer progresses (tumors grow or symptoms worsen) Side effects become more bothersome than you are willing to tolerate. There is usually more than one treatment that may have similar benefits. But differences may include: Different side effects Different schedules for receiving the treatments. Personal Issues In addition to medical factors, it is reasonable that personal issues play a role in your treatment choices. Sometimes treatments can be modified or scheduled around important personal or family events. For example, if you have an important short-term personal goal like attending a family wedding or graduation ceremony you may choose to skip or postpone a chemotherapy treatment so that you can enjoy the event without dealing with chemotherapy side effects. I ve come to find out that in this road I m traveling, that I m the one in charge. And sometimes it s necessary to change my appointment to see the doctor, or to have my infusion at a different time. Willa How much you re willing to put up with side effects is highly individual. Some women are not very bothered by hot flashes or losing all their hair. Others feel that certain side effects interfere so much with their daily lives that they re just not worth it and ask for other options. If side effects interfere a lot with things you want to do, talk with your doctor about ways to make them less bothersome, such as: Taking a break it may be possible to take a brief break from certain treatments to see if the tumors stay the same for a while without treatment Your Role in Choosing Treatments 19

21 Switching medications within the same class of treatments for example, if one form of hormone therapy causes too many side effects, you might try a different kind of hormone therapy Switching to a new class of treatments for example, switching from hormone therapy to chemotherapy. Matching your personal goals and treatment goals requires a good partnership with your doctor. Tell your healthcare providers about your personal goals when discussing treatment plans. That way you can balance your focus on controlling your cancer with your desire to live the fullest life possible. If I had to choose between a treatment or the Grand Canyon, I would go to the Grand Canyon. So many years I ve wanted to go and see the Grand Canyon, I ve never gotten there and I would definitely go see the Grand Canyon. Helen Focus of Treatment As the disease progresses, your role in choosing treatments becomes even more important. In general, with each additional treatment, the cancer is less likely to respond, and more bothersome side effects are likely. After a while, some women decide to stop disease-modifying treatments. If you and your doctor feel that the burden of therapy has begun to outweigh the benefits, you may choose to continue only the palliative treatments. Focusing on palliative care can help you feel better, spend less time in the hospital, and spend more time enjoying life. When to Stop Disease-Modifying Treatment It s hard to know when you will want to stop disease-modifying treatments. For most women with metastatic breast cancer, there will come a time when the potential benefits don t outweigh the side effects. For some women, this is an easy and natural decision; for other women, it can be very difficult. 20 Health Dialog

22 Taking an active role in your treatment planning can give you a sense of control and help you feel more comfortable while living with this disease. Think about what you might want to do if the downsides of treatments eventually outweigh their benefits. The decision about more treatment is an individual one. Some people really will want to exhaust all possibilities, whereas others will have some limits that they want to draw, in terms of side effects. Debu Tripathy, MD Then share your thoughts with your doctor, family members, and your healthcare proxy (a person you select to make medical decisions if you cannot). It is important for the person who is your healthcare proxy to understand how you feel and to know what s important to you, because he or she may have to make decisions on your behalf down the road. Your Role in Choosing Treatments 21

23 Living with Your Disease In this chapter: How Do You Know If Treatments Are Working? Managing Symptoms Urgent Symptoms Once cancer has spread, living a normal life can be challenging. Ordinary activities and decisions can be difficult when the future is uncertain. How Do You Know If Treatments Are Working? One area of uncertainty is whether your treatment is working. Are you getting a response or the symptom relief you need? Doctors have several ways of assessing how treatments are working, as described next. Symptoms How you feel is often the most important indicator of your disease. Tell your doctor of any unusual pain or discomfort, changes in appetite or weight, bleeding, or unexpected symptoms. Not every change means the cancer is spreading. With time, you will learn to sort out everyday aches and pains from unusual ones. Physical Exams Your doctor will do regular physical exams. He or she will feel for lumps or swelling. Sometimes special procedures are done to examine breathing passages or other parts of the body. Laboratory Tests Blood tests can measure levels of certain substances (sometimes called markers) that rise when tumors grow. Your doctor may also order other tests to detect the risk of bleeding or other problems. Imaging Techniques Your doctor can take a picture of internal organs to check whether tumors are growing or shrinking. Imaging techniques can include: X-rays Computed tomography (CT) scans 22 Health Dialog

24 Magnetic resonance imaging (MRI) Bone scans (also called nuclear scans) Positron emission tomography (PET) scans Ultrasound scans. Scans and lab tests are useful, but they don t replace regular doctor visits and honest discussions about how you are doing. The most helpful information is usually what you tell your doctor about how you are feeling. Make sure you understand the overall plan and goal that your doctor is outlining and how the results of different tests may influence the plan. Managing Symptoms Most cancer-related symptoms are not urgent or causes for alarm. You can usually wait to tell your doctor about them during your regular office visits. But if your symptoms interfere with your usual activities, tell your doctor sooner. Sometimes, women think they shouldn t bother telling their doctor about concerns such as difficulty sleeping, tiredness, or sexual problems. But you want to enjoy life as much as possible, so you should discuss all of your symptoms with your medical team. Almost every symptom can be helped in some way. Talk to your doctor if you have any of the following symptoms. Tiredness You may think it s normal to be tired. Tiredness or fatigue is often identified as one of the most bothersome symptoms of cancer or cancer treatments. There are medications and other approaches that relieve tiredness. Anxiety When you live with uncertainty, some wondering and worrying is normal. However, if fears and worries interfere with your ability to do your daily activities or get enough sleep, talk with your medical team. There are many resources from medications to one-on-one counseling to group support to help manage anxiety and help you adjust to living with cancer. Living with Your Disease 23

25 Constipation or Diarrhea Many people with cancer have bowel problems. Some medications for pain may cause bowel difficulties and require medical attention. There are medications that may help with these symptoms. Constipation: Some people have hard or infrequent bowel movements that are difficult to pass (constipation). Constipation can cause pain, loss of appetite, and nausea. Loose bowels (diarrhea): Some people have too many bowel movements or have loose watery stools (diarrhea). Diarrhea and nausea or vomiting can also occur with some types of chemotherapy or other treatments. Nausea Nausea and vomiting are common side effects of many cancer treatments. Medications can prevent or reduce nausea and vomiting. Tell your doctor if your nausea and vomiting continue after you take these medications. Pain All types and levels of pain can be effectively managed. If you have pain, tell your doctor. Managing pain may not mean that you will have no pain, but your pain should be relieved enough so that you are able to do most of the things that you want to do. Your doctor may consult with a palliative care team or pain specialist to help control symptoms. People with cancer rarely develop addiction or behavior problems from pain medications if they take the medication as prescribed, even when using narcotics. Pain medication is very, very important because you can t heal and you can t get on with your life if you re in pain. Willa You and your doctor should discuss your goals for pain control. Your doctor may be better able to help you manage your pain if you keep a diary or notes so you can provide information, such as: The kind of pain (dull, throbbing, stabbing, etc.) Where you feel it most When and how often it hurts 24 Health Dialog

26 How bad or intense the pain is (rate pain on a scale from 0 to 10, with 0 being no pain and 10 being the worst pain) What makes the pain better or worse How much the pain gets in the way of your usual activities. Some pain treatments involve trade-offs. For example, some forms of pain medication may make you sleepy, limit your ability to drive, or cause constipation. Any time you start or change pain medication, ask about side effects and what you can do to reduce problems. You may also want to ask about non-medication approaches to managing your pain. We know that pain is under-treated. There have been many medical studies that show that doctors don t ask and patients don t tell. Debu Tripathy, MD Urgent Symptoms Certain symptoms may require urgent attention and should prompt an immediate call to your doctor: Intense pain, especially in the back or head, as well as any new numbness or weakness. Signs of infection (such as fever, redness, or swelling) while you are receiving chemotherapy. Chemotherapy can make it more difficult for your body to fight off infection. Nausea and vomiting that have gone on long enough to make you light-headed or make your heart race (signs of dehydration). Sudden onset or worsening of shortness of breath. If you are not sure whether you should call your doctor right away, it is best to call. Living with Your Disease 25

27 Planning Ahead In this chapter: Setting Goals Jobs and Insurance Advance Directives Making plans when the future is uncertain gets tricky. However, some women say that doing some planning ahead helps free them to get on with the rest of their lives. Setting Goals It helps to have both short-term and long-term goals. Many women say that writing down goals is helpful. Written lists can be anything from a weekly To Do list to a life list of places to go and things to do. These lists can be handy when you re scheduling treatments and doctor visits which you don t want to get in the way of things you really want to do. I really wanted to return to my job. That was important to me. I had a goal, and I think you need a goal, whatever it is. Mel Jobs and Insurance For women with metastatic breast cancer who work outside the home, each woman decides what is right for her situation. Some women choose to work as long as possible, especially those who enjoy their work and have supportive coworkers. Others switch to part-time work or pursue dream jobs. Still others decide to quit work so they can spend more time with family and friends or focus on activities that have special meaning. If your employer provides your health insurance, you will need to: Tell the person who handles medical and disability claims about your illness Get written copies of all insurance policies and read them carefully so you know what is (and is not) covered Learn how options you are considering (such as switching from full-time to part-time work) might affect your insurance coverage. 26 Health Dialog

28 If you do not have health or disability insurance, you might be eligible for Social Security disability payments or other federal or state programs. See the For More Information section if you would like to contact the U.S. Social Security Administration. Having metastatic breast cancer can also cause financial stress for some women. They might be unable to work and lose their income or health insurance. Or, they might struggle with the costs of cancer treatments. If you have financial concerns, discuss them with your doctor. Advance Directives Regardless of what stage your cancer is in, it s wise to have advance directives. These legal documents: Let you decide and document what type of medical care you would like to receive if you ever become unable to speak for yourself Help other people understand what medical care you want if they are in a position to make decisions on your behalf. The table on the next page describes the different types of advance directives. Some people find that recording their wishes helps. That way, family members and healthcare proxies can hear the person s voice guiding them through difficult medical decisions. To reduce stress for yourself and your family, organize your personal, medical, legal, and financial papers. Pick someone you trust and show him or her where to find the following information: Any life, health, or disability insurance policies (make sure that beneficiaries are up-to-date) Financial assets, such as checking accounts, retirement savings, stocks, bonds, or real estate you own Legal papers, including your will, healthcare proxy, power of attorney, and/or guardianship documents. I think it s really important to go ahead and live your life the way you think you should live it, and not put it off to do when you get around to it. Willa Planning Ahead 27

29 Types of Advance Directives Type Healthcare Proxy (or healthcare agent) Living Will Power of Attorney Legal Guardian Description A person you choose to make healthcare decisions on your behalf if you are not able. The decision-maker should know you well and be willing to take on the responsibility of making decisions for you. Talk with this person when you are feeling well. Make sure he or she knows how you feel about treatments and procedures that might be considered if you can t speak for yourself (for example, if you re unconscious). A legal document in which you leave written instructions for your healthcare if you have a terminal illness (an illness that cannot be cured and results in death). Living wills give instructions about life-supporting or potentially life-sustaining treatments, for example whether they should be given, when they should be avoided, and when they should be stopped. They also give time limits for certain treatments (for example, how long you want to be put on a breathing machine). Living wills can also document where you would like to die, such as at home or in a hospital. A legal document granting one person the right to represent another person in a specific context. For example, if you re in the hospital, you might grant power of attorney to someone so they can deposit checks and pay bills for you. A person legally responsible for making decisions for a minor or for a person who lacks the mental capacity to make decisions for himself or herself. If you have young children or adults who depend on your care (such as an aging parent or a disabled adult child), you should pick someone to be their guardian in case you become unable to do so. Will A legal document in which you determine what happens to your property and financial assets after your death. Wills are not only for wealthy people. Even if all you want is for your favorite niece to get a certain piece of jewelry, you need a will to make sure it happens. 28 Health Dialog

30 Types of Treatment: Overview The class of treatment that is most likely to stop breast cancer from progressing depends on the specific characteristics of the cancer. The major classes of disease-modifying treatments for metastatic breast cancer are: Hormone therapy Chemotherapy Biological therapy. You really need to be talking with your physician about your particular tumor type, where it s showing up, what kinds of things are likely to be tried early and late. Joanne Lynn, MD In addition to the major classes of treatment, other therapies are sometimes used to help people feel better, including: Radiation therapy: Sometimes used for tumors that cause pain or interfere with body functions. Radiation makes these tumors shrink, which can relieve symptoms they are causing. Radiation therapy uses x-rays similar to those used in routine x-rays, but in higher doses. Radiation treatments are usually given in a hospital or special treatment center. Complementary and alternative medicine (CAM): There are many methods and techniques that help some women with metastatic breast cancer feel better, including acupuncture, visualization, and massage. Note that high-dose chemotherapy with stem-cell transplant is no longer used for breast cancer. Studies found that this treatment caused serious side effects and did not work any better than other treatments. Types of Treatment: Overview 29

31 Hormone Therapy In this chapter: Hormone Therapy Before Menopause Hormone Therapy After Menopause Common Types of Hormone Therapy The table below explains hormone therapy: whom it helps, how it works, and how it is taken. Hormone Therapy Whom It Helps Women who have breast cancer cells with estrogen receptors or progesterone receptors. Doctors call this hormone-receptor-positive cancer. Hormone therapy does not work on other types of breast cancer cells. When doctors first diagnose breast cancer, they often do a test to find out if the cancer may respond to hormone therapy. Other doctors do that test on a biopsy of the tumor that recurred or metastasized. How It Works How It Is Taken Some breast cancer cells need the female hormone estrogen to grow. Hormone therapy works by either preventing cancer cells from using estrogen or by preventing the body from producing estrogen. Most forms of hormone therapy are taken in pill form each day. 30 Health Dialog

32 Hormone Therapy Before Menopause Before menopause, women s ovaries make a significant amount of estrogen. For women who have not gone through menopause, some kinds of hormone therapy treatments will cause them to go into early menopause. Hormone therapy can include: Medications that prevent the cancer from using estrogen Medications that prevent the ovaries from making estrogen (ovarian suppression) Surgery to remove the ovaries Radiation treatment of the ovaries, which prevents them from making estrogen (ovarian ablation). Hormone Therapy After Menopause After menopause, estrogen levels are already low. However, tissues other than the ovaries still make some estrogen. For women after menopause, hormone therapy can include medication that: Prevents the other tissues from making estrogen Prevents the cancer cells from using estrogen. Common Types of Hormone Therapy Common types of hormone therapy include: Nonsteroidal anti-estrogens, which include tamoxifen (Nolvadex ) and toremifene (Fareston ), block the activity of estrogen in the breast. Tamoxifen has been used for many years to treat advanced breast cancer. This drug can be used by women who have gone through menopause and women who have not. Toremifene can be used only by women who have gone through menopause. Hormone Therapy 31

33 Aromatase inhibitors, which include anastrozole (Arimidex ), exemestane (Aromasin ), and letrozole (Femara ). These newer medications reduce the amount of estrogen in the body. These drugs can be used only by women who have gone through menopause. Ovarian suppressors, such as goserelin (Zoladex ) and leuprolide (Lupron Depot ), prevent the ovaries from making estrogen. Progestins, such as megestrol acetate (Megace ), may help treat tumors that have become resistant to other types of hormone therapy. These drugs can be used only by women who have gone through menopause. Estrogen receptor antagonists, such as fulvestrant (Faslodex ), block the estrogen receptor directly. This drug can be used by women who have gone through menopause and have not had a response to other hormone therapies. 32 Health Dialog

34 Chemotherapy In this chapter: Common Types of Chemotherapy Other Chemotherapy Drugs The table below explains chemotherapy: whom it helps, how it works, and how it is taken. Chemotherapy Whom It Helps How It Works How It Is Taken Women who have: Tumors not likely to respond to hormone therapy Tumors that have spread to several locations or to organs such as the liver or lung Cancer that comes back while they are taking hormone therapy Chemotherapy drugs destroy cells that are dividing and growing rapidly Cancer cells divide and grow rapidly, but so do some normal cells (including hair follicles and cells that line stomach and intestines). As a result, chemotherapy kills both cancer cells and some normal cells, which is why it causes side effects, such as hair loss and nausea. Some chemotherapy drugs are given by infusion directly into the bloodstream over a few minutes to a few hours (intravenous or IV drug delivery). These drugs are given in a hospital or doctor s office. Some chemotherapy drugs are taken in pill form but this is rare Usually it is given in cycles, with days or weeks off between cycles to allow the body to recover Chemotherapy 33

35 Common Types of Chemotherapy There are many different types of chemotherapy used to treat metastatic breast cancer. These include: Anthracyclines, such as doxorubicin (Adriamycin ) and epirubicin (Ellence ) Capecitabine (Xeloda ) Cyclophosphamide (Cytoxan ) Taxanes, such as docetaxel (Taxotere ) and paclitaxel (Abraxane, Taxol ). Some of these drugs are also given to women with early breast cancer. Other Chemotherapy Drugs Other drugs may be used if the cancer continues to grow while a woman is receiving chemotherapy or if it starts growing again within a year after she finishes a regimen that contains an anthracycline. These other drugs include: Carboplatin (Paraplatin ) Eribulin mesylate (Halaven ) Gemcitabine (Gemzar ) Ixabepilone (Ixempra ) Liposomal doxorubicin (Doxil ) Vinorelbine (Navelbine ). No single drug or combination of drugs is better than others at treating metastatic breast cancer. Each person responds differently to different drugs. When used in combination, these drugs may have a better chance of working than when they are used alone. Women and their doctors need to consider the possibility that a drug, or drug combination, that is more effective in destroying cancer cells usually has increased side effects. Oftentimes, these drugs do not increase the length of time that a woman with metastatic breast cancer lives. 34 Health Dialog

36 Biological Therapy The table below explains biological therapy: whom it helps, how it works, and how it is taken. Biological Therapy Whom It Helps How It Works How It Is Taken Women who have cancer cells with certain biological characteristics. Biological therapy does not work on breast cancer cells that do not have these characteristics. Biological therapies help the immune system fight cancer or keep it from spreading. Biological therapy is usually given intravenously (injected directly into the bloodstream) at the same time as chemotherapy. Common Types of Biological Therapy A well-studied biological therapy for treating breast cancer is trastuzumab (Herceptin ). It works on breast cancer cells that overexpress (make too much of) a protein called HER2/neu. These cancer cells tend to grow faster than cells that do not have a lot of HER2/neu. Herceptin targets these cancer cells and slows or stops their growth. About a quarter of women with breast cancer have tumor cells that overexpress HER2/neu. A test can determine if your tumor overexpresses HER2/neu proteins. This test can be done on new or older tissue samples. Another targeted biological therapy approved for treating metastatic breast cancers that overexpress HER2/neu is lapatinib (Tykerb ), an epidermal growth factor receptor inhibitor. Lapatinib may be given to women who have received prior therapy including an anthracycline, a taxane, and trastuzumab. Some people have side effects from biological medications, and doctors are still studying these therapies and which people are most likely to benefit from them. Biological Therapy 35

37 Complementary and Alternative Medicine Some women use complementary and alternative medicine (CAM) therapies along with standard treatment. While there are no firm definitions of these terms, many healthcare professionals think of them this way: Standard treatments widely accepted and used by most of the medical community Complementary therapies used in addition to standard treatments Alternative therapies used instead of standard treatments. Complementary and alternative medicine therapies include a wide range of practices and philosophies. Some examples include: Chinese acupuncture Herbal medicine Mind-body techniques, such as meditation, visualization, or hypnosis Hands-on therapies, such as chiropractic medicine and massage Dietary supplements, such as vitamins Plant-based remedies, which include herbal products and marijuana. There is no evidence that any type of complementary or alternative therapy can control or change the course of metastatic breast cancer. There is some evidence that acupuncture may help relieve nausea or vomiting that can be a side effect of chemotherapy. There is also some evidence that massage therapy may help alleviate pain and improve mood. You may find that other approaches help you cope better with your disease. For example, some women say that massage therapy helps relieve stress and discomfort, or that meditation improves their mental and emotional well-being. There is often little or no scientific evidence about the safety of most CAM therapies and products. While some may be perfectly safe, others may cause harm. For example, St. John s Wort, an herbal remedy for depression, is known to interact with certain breast cancer treatment drugs and make them less effective or more toxic. 36 Health Dialog

38 Because of the potential for harmful interactions, always talk with your doctor before using any CAM therapies that are: Taken into the body (such as pills, dietary supplements, or herbs taken by mouth) Inhaled into the nose Injected into the bloodstream. Compared with therapies that involve taking a pill, herb, or injection, therapies that you do or experience are most likely to be safe. Examples of these therapies include meditation, biofeedback, visualization, and massage. If you want to explore complementary or alternative therapies, talk with your medical team. Many cancer care centers now work with reliable and reputable CAM providers. Complementary and Alternative Medicine 37

39 Clinical Trials You may hear about treatments offered through clinical trials. A clinical trial is a study that tries to learn about a new treatment by selecting patients to receive it and then carefully monitoring how they respond. There are also clinical trials to improve palliative care treatments and people s quality of life. The clinical trial process is closely supervised and monitored to be sure that patients are as safe as possible. All trials require that patients understand the study and the possible benefits and risks. Those who join a clinical trial are asked to sign an informed consent form before they have any tests or treatments required for the trial. If you are interested in participating in a clinical trial, ask your doctor about what trials may be available and appropriate for you. The table on the next page explains the phases of a clinical trial. Understand the Risks and Benefits Do not expect a miracle cure from a clinical trial. There is no guarantee that a new treatment is better than a standard treatment. If you think you might like to participate in a clinical trial, make sure you understand all the potential risks and benefits of the treatments being tested. Clinical Trial Process Before new treatments are tested on humans, they are studied in the laboratory and tested on animals. If a treatment shows promise, it is evaluated in people by using a three-step process. 38 Health Dialog