HORMONE THERAPY AND CHEMOTHERAPY

Transcription

1 A SHARED DECISION-MAKING PROGRAM Early breast cancer HORMONE THERAPY AND CHEMOTHERAPY Are they right for you? BCA001B V06

2 Early breast cancer HORMONE THERAPY AND CHEMOTHERAPY Are they right for you? This program content, including this booklet and the accompanying video, is copyright protected by the Foundation for Informed Medical Decision Making, Inc. 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. BCA001B V06

3 What You Should Know About 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 or treatment. If you have questions about whether your health plan covers a particular treatment, talk with your health plan or your doctor. Who made this program? The information in this program is based on the latest medical research. The Foundation for Informed Medical Decision Making 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. 2 Health Dialog

4 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. 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. 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 invasive breast cancer. They received a small fee for their time. They do not profit from recommending any treatment or self-care strategy. What You Should Know About This Program 3

5 Contents Introduction... 6 About This Program 6 Is This Information for You? 6 Chance of Cancer Coming Back... 7 Three Things to Keep in Mind 7 Recurrence and Metastatic Cancer 7 What Affects the Chance of Recurrence? 8 Types of Treatment Local Treatments 10 Systemic Treatments 10 Pathology Reports and Other Tests Hormone Therapy About Hormone Therapy 14 Hormone Therapy Before Menopause 14 Hormone Therapy After Menopause 15 Possible Benefits of Hormone Therapy 15 Side Effects of Hormone Therapy Are Similar to Menopause Symptoms 16 Benefits and Risks of Hormone Therapy: A Summary 19 Chemotherapy About Chemotherapy 20 Possible Benefits of Chemotherapy 21 Possible Side Effects of Chemotherapy 22 Chemotherapy Might Affect Thinking and Memory 24 4 Health Dialog

6 Contents (continued) Biological Therapy How Biological Therapy Works 25 Possible Benefits of Herceptin 25 Possible Side Effects of Herceptin 25 Rare but Serious Side Effects of Herceptin 25 Combining Hormone Therapy and Chemotherapy No Additional Treatment Talking to Others Can Help You with This Decision 28 Tests to Help with This Decision 29 Comparing Treatments Working with Your Care Team Shared Decision-Making 32 Your Care Team 33 Making Your Decision Making the Best Decision for You 35 Working with Your Doctor 36 Definitions of Medical Terms For More Information Research Publications Used to Write This Booklet Contents 5

7 Introduction About This Program This video and booklet program is designed to help you work with your doctor to decide whether to have additional treatment hormone therapy, chemotherapy, biological therapy, or other medications after your breast cancer surgery. This treatment is called adjuvant therapy. There are good reasons why you might choose to have one of these treatments, a combination, or none at all. Is This Information for You? This information is for women with invasive breast cancer: Who can be treated with surgery and Who have not had hormone therapy or chemotherapy before surgery (called neoadjuvant therapy ) This information is not for: Women who were given hormone therapy or chemotherapy before surgery Women with noninvasive or Stage 0 breast cancer alone, also called ductal carcinoma in situ (DCIS) or lobular carcinoma in situ (LCIS) Women with inflammatory breast cancer Women with metastatic breast cancer cancer that has spread to distant parts of the body (beyond the breast and underarm lymph nodes) Women who are pregnant If you have questions about whether the information in this program is right for you, please talk with your doctor or other healthcare provider. 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. 6 Health Dialog

8 Chance of Cancer Coming Back Information in this chapter includes: Three Things to Keep in Mind Recurrence and Metastatic Cancer What Affects the Chance of Recurrence? Even if cancer comes back, it s not necessarily life threatening. When it is found early and is located just in the breast area, the cancer can usually be successfully treated with more surgery or radiation. The goal of having additional treatment is to reduce the chance of cancer coming back, both in the breast and in other parts of the body. Three Things to Keep in Mind Just thinking about cancer coming back can be difficult, but it may help to keep three things in mind: The cancer may not come back at all. Ten years after surgery and radiation, many women will be cancer free even without more treatment. Cancer comes back in different women at different times. If the cancer does come back, it might be years from now. Recurrence and Metastatic Cancer When cancer comes back it s called a recurrence. Recurrence outside the breast or chest wall area is called metastatic cancer. Metastatic cancer can sometimes be controlled, but at this time, there is no way to cure it. Additional treatment is intended to help reduce the chance of cancer coming back, both in the breast or breast area and elsewhere in the body. There are so many factors that weigh in to what is good for each individual woman. Mary B. Chance of Cancer Coming Back 7

9 What Affects the Chance of Recurrence? Even among women with early breast cancer, the chance of having cancer come back can vary widely. Doctors can estimate the chance based on certain characteristics of the cancer that are listed in the pathology report, such as the tumor size and the number of underarm lymph nodes with cancer in them. The chance of cancer coming back is lower when the tumor is smaller and higher when the tumor is larger. It s also lower when there are no lymph nodes with cancer in them and higher when there are several. This is because when breast cancer spreads, the cancer cells often travel first to the lymph nodes under the arm. For example, for a woman with a tumor smaller than 1 centimeter and no positive lymph nodes, the chance of cancer coming back is lower than average. For a woman with two positive lymph nodes and a 2.5-centimeter tumor, the chance is higher than average. The chart on the right shows reasonable estimates for women at average risk as well as women at lower- and higherthan-average risk. Number of Women Who Are Cancer Free at 10 Years with No Additional Treatment As you can see, cancer does not come back for many women, even without additional treatment. However, each case of cancer is different, and your own risk may be lower or higher than the examples shown in this booklet. You can read more about other information that helps estimate your risk in the Pathology Reports and Other Tests chapter. It s important to note that the results of the studies presented in this booklet can t predict whether any one woman will be helped by hormone therapy, chemotherapy, or biological therapy. Instead, these studies 8 Health Dialog

10 looked at a large group of women with similar cancers and how many can be helped by additional treatments. In the following chapters you ll see how hormone therapy, chemotherapy, and biological therapy can affect the chance of cancer coming back, and what side effects or complications each treatment can have. Chance of Cancer Coming Back 9

11 Types of Treatment There are two major types of treatment for breast cancer: Local treatments Systemic treatments Local Treatments Local treatments, such as mastectomy or lumpectomy with radiation, treat the local breast area only. For many women with early-stage tumors, local treatment removes the cancer, and it never comes back. But sometimes it does, either in the breast area or in another part of the body. Systemic Treatments Systemic treatments reduce the chance that cancer will come back in the affected breast, the other breast, or in some other part of the body. You might wonder: If systemic treatment can lower the chance that cancer will come back, and can save lives, why doesn t everyone have it? There are two main reasons: Additional treatment makes very little difference for some women with early-stage breast cancer. Additional treatments have side effects some are mild and go away, but others can be serious and cause permanent health problems. Making a good decision about whether to have additional treatment depends on how you feel about: How much difference it might make compared to no treatment at all How much you might be bothered by any side effects from treatment One woman may feel that any benefit of more treatment is worthwhile, even if it s a small one. Another woman may feel that a small benefit isn t worth the chance of having side effects or complications from treatment. There is no right or wrong answer. Your decision will depend on how you feel about the issues involved. To learn more about treatments that may be appropriate for you, see the chapters on hormone therapy, chemotherapy, and biological therapy. 10 Health Dialog

12 Pathology Reports and Other Tests The characteristics of breast cancer influence the chance it will come back after initial local treatments (surgery and radiation). These characteristics are described in your pathology report. After your biopsy and surgery, your doctor sent the breast tissue and perhaps lymph node tissue to a pathologist. This specially trained doctor checked to be sure all the cancer was removed, and then looked at the cancer. The results are in your pathology report, which is usually written in technical medical language. The information in the pathology report cannot predict exactly what will happen in your situation, but you and your doctor can use the information to: Estimate the chance the cancer may come back Decide which treatments might be most appropriate Estimate how much benefit they might provide The table on the next two pages provides some key pieces of information that you might find in your pathology report. Pathology Reports and Other Tests 11

13 Key Parts of a Pathology Report Gross Description Tumor Size Margins Type Grade (or Histologic Grade) This section describes the color, texture, and size of the tissue that was removed during the biopsy or surgery. The pathologist will measure the size of the tumor. Usually the largest dimension is reported as the size. The surgical margin is a border of healthy tissue around the tumor. The pathologist examines the tissue to see if there are any cancer cells near the edges. If there are no cancer cells near the edges, the margins are called clear or negative or uninvolved. If there are cancer cells at the edges of the tissue, the margins are called positive or involved. Type describes the cancer cells by the kind of normal cells that the tumor cells look most like. Most invasive breast cancers are described as infiltrating ductal cancers, but there are also infiltrating lobular cancers, other types of cancer, and various combinations of cancer. Some of these types behave differently from one another. Grade is a description of how abnormal the cells look and how actively they are dividing. The pathologist studies three key characteristics of the tumor cells and assigns a number to each one. These numbers are combined into one score that can range from 3 to 9. This score is then translated into a grade from 1 to 3. A higher grade or score means the cancer cells are very different from normal cells and are more likely to recur. A lower grade or score means the cancer cells look more like normal cells and are more likely to be slow growing. This information, along with information from other tests, can help you and your doctor consider what type of treatment you may need after your breast cancer surgery. 12 Health Dialog

14 Key Parts of a Pathology Report (continued) Hormone Receptor Status HER2/neu Normal breast cells and some cancer cells have receptors for the estrogen and progesterone hormones. Tests for hormone receptors measure how many of the cancer cells contain these receptors. If the cancer cells have many estrogen or progesterone receptors, the pathology report will say that the tumor is estrogen-receptor-positive (ER-positive) and/or progesterone-receptor-positive (PR-positive). If the cancer cells have only a few or none of these receptors, the pathology report will say that the tumor is ER-negative and PR-negative. Cancer that is hormone-receptor-positive is more likely than cancer that is hormone-receptor-negative to respond well to hormone therapy such as tamoxifen and aromatase inhibitors. If cancer cells have too many HER2/neu genes or make too much HER2/neu protein, the pathology report says the tumor overexpresses HER2/neu. About 25 out of 100 women with breast cancer have this kind of tumor. Tumors of this type tend to grow and spread more aggressively than others. But they often respond to a medication called trastuzumab (Herceptin ), which blocks certain growth proteins from attaching to cancer cells. Knowing the tumor s HER2/neu status can help your doctor determine which type of therapy is most likely to be effective. A FISH (fluorescence in situ hybridization) test determines if a tumor overexpresses HER2/neu proteins and can be used on new or older tissue samples. Lymph Node Status If lymph nodes were removed during the surgery, they ll be checked to see if they contain any cancer cells. If they do, the report will note the number of positive lymph nodes how many of them contained cancer. If they did not contain cancer cells, they are called negative. The chance of cancer coming back is higher if there are positive lymph nodes (meaning they contain cancer). Pathology Reports and Other Tests 13

15 Hormone Therapy Information in this chapter includes: About Hormone Therapy Hormone Therapy Before Menopause Hormone Therapy After Menopause Possible Benefits of Hormone Therapy Side Effects of Hormone Therapy Are Similar to Menopause Symptoms Benefits and Risks of Hormone Therapy: A Summary About Hormone Therapy Your pathology report includes information about whether hormone therapy can be used to treat your cancer. Specifically, the report will show whether the cancer is hormonereceptor-positive, which means that hormone therapy may help prevent cancer cells from growing. If the cancer does not contain these receptors, then hormone therapy may not be helpful. The biggest piece of information was finding out that the tumor was hormonally responsive... Betsy C. There are several types of hormone therapies. Hormone therapies are usually pills that are taken daily for several years. Breast cancer cells need the female hormone estrogen to survive. Hormone therapies prevent the cancer cells from making or using estrogen, so these cells can t grow. The type of hormone therapy that a woman considers will depend on whether she has gone through menopause. Hormone Therapy Before Menopause Before menopause, women s ovaries produce a significant amount of estrogen. That s why women before the age of menopause have two main choices: Take the medication tamoxifen daily, for up to 5 years Have treatment to stop the ovaries from producing estrogen (ovarian suppression or ovarian ablation) Tamoxifen, commonly known as Nolvadex, works inside cancer cells to block the effects of estrogen. Tamoxifen has been used for 14 Health Dialog

16 many years, so doctors know a lot about its possible benefits and side effects. Another choice for premenopausal women is to shut down estrogen production in the ovaries. This can be done with: Medication (ovarian suppression) or Surgery or radiation (ovarian ablation) All these methods will cause women to go into early menopause. Women who take medication may start having periods again after stopping treatment, and may be able to have children. Surgery and radiation permanently shut down the ovaries. Women who have these treatments will not be able to have children. Hormone Therapy After Menopause After menopause, women still have estrogen in the body, but it s not made by the ovaries anymore. An enzyme called aromatase converts a substance in the body to estrogen. Medications called aromatase inhibitors stop the body from making estrogen. Women who are past menopause may choose either tamoxifen or aromatase inhibitors. Aromatase inhibitors include: Anastrozole (Arimidex ) Exemestane (Aromasin ) Letrozole (Femara ) Many doctors now recommend that women take an aromatase inhibitor before or following tamoxifen. In large studies with several thousand postmenopausal women, researchers found that anastrozole seems to be even better than tamoxifen at lowering the chance that cancer will come back. Research is ongoing to see which medications or combinations of medications might be most effective, whether the benefits will last, and whether there are long-term side effects. Possible Benefits of Hormone Therapy On average, hormone therapy can reduce the chance of cancer coming back by about 50% to 60%, or about half. To see what this means, round number estimates are used to compare women who did not take hormone therapy with women who did take it. Hormone Therapy 15

17 You can see the number of women who would be cancer free at 10 years after taking hormone therapy. Number of Women Who Are Cancer Free at 10 Years For women with an average chance of cancer coming back With no additional treatment, about 76 women out of 100 would be cancer free. With hormone therapy, about 12 more women would be cancer free. When the chance of cancer coming back is lower, fewer women are helped. When it s higher, more women are helped. Your chance of cancer may be higher or lower than the example shown here. In the Comparing Treatments chapter, you can see more charts that show how all the treatments compare for women at higher and lower risk. Side Effects of Hormone Therapy Are Similar to Menopause Symptoms Hormone therapies block the effect of estrogen or reduce the amount of estrogen in the body. As a result, women on hormone therapy may have side effects similar to the symptoms some women have around menopause, when estrogen levels naturally go down. Most side effects of hormone therapy are mild and temporary, but some can be more serious. The most common symptoms include: Hot flashes Vaginal discharge or dryness Sexual problems Your doctor may be able to suggest medications that can help with hot flashes and creams that can improve vaginal dryness. For women who have already gone through menopause, hormone therapy further lowers the amount of estrogen in the body, which may increase these symptoms. 16 Health Dialog

18 Premenopausal women who have any type of hormone therapy or surgery that prevents the ovaries from producing estrogen are more likely than older women to have problems with menopause-like symptoms. Some women try one hormone therapy and then stop taking it if they experience side effects they cannot tolerate. At that point, they may try another hormone therapy. Possible Side Effects of Tamoxifen Women who still have their menstrual periods may find that their periods become lighter or eventually stop when they take tamoxifen. Depending on how close a woman is to menopause, her periods may or may not start again when she stops taking the medication (in other words, she may enter menopause). Several studies have also reported more serious possible harms, but they are rare, between 1/2 and 1 extra case for every 100 women who take tamoxifen. Almost all of these serious possible harms occur in postmenopausal women. These possible harms include: Endometrial cancer, which is cancer in the lining of the uterus. It is almost always caught early and may be cured by surgery. Blood clots in the lungs or leg veins. Most of these are treatable. Although rare, some do cause death. Eye problems, called cataracts. Some of these require surgery. Tamoxifen does not seem to cause depression or weight gain. Studies show that women who take a placebo (a sugar pill) are just as likely to report these problems as women who take tamoxifen. The long-term impact of tamoxifen hasn t been negative for me. It s a pill that I ve taken for five years. And for me, it s something that is an added part of my fighting my cancer. Patricia B. Hormone Therapy 17

19 Possible Side Effects of Aromatase Inhibitors Some side effects of anastrozole (Arimidex ), such as hot flashes, are similar to those of tamoxifen. Other side effects are different, including: Bone or joint pain Osteoporosis Higher cholesterol levels in some women Women taking aromatase inhibitors may need regular monitoring of their bone health. Both anastrozole and letrozole (Femara ) may increase bad cholesterol (also called LDL or low-density lipoproteins). Results of a large study showed that in women on hormone therapy, higher cholesterol may be more common in those taking anastrozole than in those on tamoxifen. Compared with tamoxifen, exemestane (Aromasin ) seems to be less likely to cause vaginal discharge and blood clots and more likely to cause osteoporosis. Joint pain and diarrhea were more common with exemestane. It s not yet clear how letrozole and exemestane affect the chance of endometrial cancer. Women with health problems, such as osteoporosis, may want to choose hormone therapies that are less likely to make such problems worse. With any medication, if you notice bothersome side effects, it may help to discuss them with your doctor. Often there are ways to relieve side effects or treat problems that result from the therapies. For example, some women who choose aromatase inhibitors also take medications called bisphosphonates to help prevent osteoporosis. Bisphosphonates include: Alendronate (Fosamax ) Etidronate (Didronel ) Risedronate (Actonel ) However, these medications may also cause some side effects such as upset stomach or flu-like symptoms. 18 Health Dialog

20 Benefits and Risks of Hormone Therapy: A Summary The table below summarizes the benefits, side effects, and risks of hormone therapy. Hormone Therapy Benefits, Side Effects, and Risks Tamoxifen Aromatase Inhibitors Ovarian Suppression or Ablation (Medication or Surgery) Who s Premenopausal and post- Postmenopausal women only Premenopausal women only Eligible menopausal women Benefits Lowers the chance that cancer will Lowers the chance that cancer will Lowers the chance that cancer will come back by about 50% come back by about 60% come back by about 30% Side Effects Menopause-like symptoms, including hot flashes, cold sweats, vaginal Menopause-like symptoms (less often than tamoxifen) Menopause-like symptoms. Immediate estrogen withdrawal discharge or dryness Vaginal dryness and loss of sex drive more common with certain may cause more bothersome menopause-like symptoms. aromatase inhibitors than with Infertility (may be temporary with tamoxifen medication) Serious Risks Small increased risk of endometrial cancer Small increased risk of blood clots Small increased risk of cataracts Bone or joint pain Osteoporosis Higher cholesterol with some medications Early menopause may put some women at risk of osteoporosis and heart disease (although these risks are also determined by family history) Hormone Therapy 19

21 Chemotherapy Information in this chapter includes: About Chemotherapy Possible Benefits of Chemotherapy Possible Side Effects of Chemotherapy Chemotherapy Might Affect Thinking and Memory About Chemotherapy Chemotherapy involves taking medications that target cancer cells. These medications can be: Oral medications, usually pills Intravenous (IV) medications, in which a needle is used to deliver the chemotherapy directly into the bloodstream over the course of a few hours. This form of chemotherapy is usually given in a hospital or doctor s office. A combination of the two (both pills and IV) Chemotherapy is sometimes given in cycles, with days or weeks off in between to allow the body to recover. Treatment is usually given for 3 to 6 months. Chemotherapy can be used to treat all types of breast cancer; however, it generally works better on cancers that are hormone-receptornegative. Since my form of cancer was a little bit more on the aggressive side than some of the other cancers, that s one of the things that fit into my making the decision to go for chemotherapy. Dorothy B. 20 Health Dialog

22 Several medications are usually combined in a standard pattern, which is called a regimen. The regimen is named for the initials of the combination of medicines. Common Chemotherapy Regimens AC AC followed by Taxol AC followed by Taxotere CAF Adriamycin (doxorubicin) and cyclophosphamide Adriamycin (doxorubicin), cyclophosphamide followed by Taxol (paclitaxel) Adriamycin (doxorubicin), cyclophosphamide followed by Taxotere (docetaxel) Cyclophosphamide, Adriamycin (doxorubicin), and 5-fluorouracil The timing of chemotherapy depends on each woman s situation. For example, women who have a lumpectomy may have chemotherapy before radiation. Possible Benefits of Chemotherapy On average, chemotherapy can reduce the chance of cancer coming back by about 25%, or by one quarter. Newer chemotherapy regimens that use more medicines and shorter treatment cycles reduce the chance that cancer comes back by about 40%. The long-term benefits seemed to outweigh, to me, the short-term inconvenience and discomfort. Alice L. CMF TAC Cyclophosphamide, methotrexate, and 5-fluorouracil Taxotere (docetaxel), Adriamycin (doxorubicin), and cyclophosphamide Chemotherapy seems to work better in younger women. So, women before the age of menopause generally those younger than 50 may get better results than the Chemotherapy 21

23 ones shown in the following chart. Women older than 70 may benefit from chemotherapy, especially if they are in good health. However, older women may not get as large a benefit as younger women. Number of Women Who Are Cancer Free at 10 Years For women with an average chance of cancer coming back With no additional treatment, about 76 women out of 100 would be cancer free. With chemotherapy, about 6 more women would be cancer free. How much chemotherapy might help you depends upon your age, whether the cancer has spread to your lymph nodes, and other characteristics of your cancer. Keep in mind that your treatment may be more or less than what is shown here. As with hormone therapy, when the chance of cancer coming back is lower, fewer women are helped. When it s higher, more are helped. In the Comparing Treatments chapter, you can see more charts that show how all the treatments compare for women at higher and lower risk. Possible Side Effects of Chemotherapy Chemotherapy side effects can be mild or severe. Most are temporary, but some can be permanent. Many chemotherapy medications have similar side effects because they work by killing cells that are rapidly dividing. This includes the cancer cells, but also certain healthy cells like the ones in: The roots of hair The lining of the mouth, stomach, and intestines Bone marrow that produces blood cells That is why the most common side effects of chemotherapy include hair loss, mouth sores, nausea (upset stomach), vomiting, and anemia that can cause fatigue (tiredness). 22 Health Dialog

24 Nausea and vomiting are less of a problem now than in the past because there are medications called anti-emetics to help prevent them. However, these medications may cause additional fatigue. Needle acupuncture may also help reduce vomiting following chemotherapy. The side effects listed in this chapter are from the most widely used chemotherapy regimens. These numbers were taken from large clinical trials. Researchers have found that women younger than age 64 and women with other health issues may have more problems with chemotherapy side effects. Your doctor should be able to give you more information about the possible side effects for the particular regimen that you may be considering. Common Side Effects During Chemotherapy Treatment Most of the following side effects are mild or moderate. They are usually not severe. Fatigue (being tired) Hair loss Nausea and/or vomiting (severe in 5% to 15% of women) Mouth sores (interfere with eating in 1% to 3%) Diarrhea (severe in 1% to 5%) Low blood cell counts that can delay treatment or lead to reduced doses (5% to 20%) Muscle pain (with docetaxel [Taxotere ] or paclitaxel [Taxol ]) Nerve problems, such as pain, numbness, tingling, or weakness (with docetaxel or paclitaxel) Hair loss, nausea, fatigue were all things that I could deal with if, in the long term, it made a difference. Jane P. Long-Term Side Effects of Chemotherapy Premature menopause and infertility Weight gain (average 5 to 10 pounds) Fatigue Nerve problems (with docetaxel or paclitaxel) Chemotherapy 23

25 Some fatigue and weight gain are common after a diagnosis of breast cancer, even among women who do not take chemotherapy. Chemotherapy can affect a woman s ability to become pregnant. Younger women who wish to have children may choose to have an additional surgery to remove their eggs and have them preserved before undergoing chemotherapy or surgery to remove the ovaries. Rare but Serious Side Effects of Chemotherapy Serious infections that require treatment in a hospital (1% to 5%). Most are treatable, but some can be life threatening. Blood clots (1% to 3%) Leukemia and other bone marrow disorders (0.1% to 0.5%; may be more common with radiation). Usually fatal. Heart problems (1% to 2%, with doxorubicin [Adriamycin ]) The chance of these serious side effects is higher in older women and those with serious health problems. Chemotherapy Might Affect Thinking and Memory Some women have reported that chemotherapy causes trouble with their thinking and memory. However, the long-term effect of chemotherapy on the brain is not well understood. Women whose thinking and memory do not improve following treatment may be helped by certain medications and rehabilitation programs to improve memory and decrease fatigue. Chemo brain, I think I still have it. I don t know if that s a long-term side effect, but I do feel that I don t have the memory I had at one point. Dorothy B. 24 Health Dialog

26 Biological Therapy Information in this chapter includes: How Biological Therapy Works Possible Benefits of Herceptin Possible Side Effects of Herceptin Rare but Serious Side Effects of Herceptin How Biological Therapy Works Biological therapy targets cancer cells with specific biological characteristics, so it is only for women with a certain kind of tumor called HER2/neu-positive. This means that the tumor has too much of a protein called HER2/neu. About 25 out of 100 women with breast cancer have this type of tumor (cancer). Trastuzumab (Herceptin ) is the biological therapy available to women with early-stage breast cancer that is HER2/neu-positive. Other biological therapies are being tested in clinical trials. Herceptin can be combined with chemotherapy. It is given intravenously at the same time as chemotherapy, and for about a year afterward. Possible Benefits of Herceptin Herceptin has been shown to reduce the risk of recurrence by about 50%. Possible Side Effects of Herceptin In clinical studies, about 25 out of 100 women who were given Herceptin, with or without chemotherapy, experienced the following side effects: Flu-like symptoms, such as fever, chills, muscle aches, and nausea Allergic rash Diarrhea Increased cough These side effects were usually treatable and not as bothersome after the initial treatment of Herceptin. Rare but Serious Side Effects of Herceptin Rare but serious lung and heart problems, such as pneumonia and heart failure, can also occur with Herceptin and chemotherapy. Women who have had certain types of chemotherapy Biological Therapy 25

27 are at greater risk of developing these serious side effects. Women age 50 or older and women with pre-existing heart problems are also at greater risk of developing these side effects with Herceptin and chemotherapy. In large studies, 1 out of 100 women develops heart problems when taking a certain type of chemotherapy. With the addition of Herceptin, about 3 more women out of 100 would have heart problems. Women who are taking Herceptin are usually watched closely by their doctors. Any heart problems that develop usually get better once a woman stops taking the medication. 26 Health Dialog

28 Combining Hormone Therapy and Chemotherapy Some women who have hormone-receptorpositive tumors consider taking both hormone therapy and chemotherapy. Taking both treatments can increase the chance of being cancer free, but also causes more side effects. The decision about taking both depends on: Whether the cancer is hormonereceptor-positive Whether the cancer is HER2/neupositive and, if so, how a woman feels about taking Herceptin at the same time as chemotherapy How a woman feels about the additional benefit What types of side effects she is prepared to accept Number of Women Who Are Cancer Free at 10 Years For women with an average chance of cancer coming back With hormone therapy, about 88 out of 100 women would be cancer free. With both hormone therapy and chemotherapy, about 3 more women would be cancer free. I chose to make the chemo and tamoxifen options that would help me fight the battle. Patricia B. Combining Hormone Therapy and Chemotherapy 27

29 No Additional Treatment Information in this chapter includes: Talking to Others Can Help You with This Decision Tests to Help with This Decision Some women choose to not have either hormone therapy or chemotherapy. They may worry more about their chance of having side effects than about their chance of having cancer come back. Some women think that the benefit they might get from additional treatment isn t enough to make it worthwhile for them. The choice of no additional treatment makes perfect sense if the risk is truly small. William Wood, MD Some older women may decide not to have any additional treatment because they feel they won t live long enough for the treatment to make a difference. If it does come back, breast cancer can sometimes take years to return. A woman who is older or has another illness that is likely to shorten her life may feel that breast cancer treatment that could cause discomfort or complications now doesn t make sense for her. Talking to Others Can Help You with This Decision Whatever your reasons, if you think you d rather not have additional treatment, tell your doctor. If you need help thinking through this decision, you might want to talk to others who can help you sort things out. Feeling comfortable with a decision to have no additional treatment may not be easy. Most women are advised to have additional treatment, or at the very least, they are told they might benefit from it. Still, as the charts in this booklet show, when the chance of cancer coming back is low, the number of women helped is quite small. The chemotherapy had enough negative side effects, and particularly long-term and permanent ones, that it didn t seem worth that risk. Jane P. 28 Health Dialog

30 Tests to Help with This Decision Oncotype Dx is a gene assay, which is a test of genes within a tumor. This test can estimate a 10-year risk of recurrence. It is being used to help doctors and patients make decisions about risks and benefits of additional treatments, such as chemotherapy. Oncotype Dx is currently only approved for women with Stage 1 or 2, node-negative, estrogen-receptor-positive breast cancer when used within 6 months of diagnosis. Ask your doctor whether this test may help with your decision about chemotherapy. I know that cancer could come back in five years whether or not you have chemotherapy, so felt comfortable with my decision. Mary B. No Additional Treatment 29

31 Comparing Treatments The chance of having cancer come back and the impact of treatment can vary depending on the specifics of your case. The charts on this page and the next page show how the treatments compare for women in three different situations: Women at average risk Women at higher-than-average risk Women at lower-than-average risk The bars show how many women out of 100 would be cancer free and how many would have cancer come back within 10 years, depending on which treatments they choose. As you see, most women do not have cancer come back, even with no additional treatment. Having both treatments provides the lowest chance of having cancer come back, but also has the most side effects. Your doctor should be able to help you get a better estimate of what you can expect, based on the specifics of your situation. Number of Women at Average Risk Who Are Cancer Free at 10 Years *Hormone therapy is only an option for women with hormone-receptor-positive cancer. Number of Women at Higher-Than-Average Risk Who Are Cancer Free at 10 Years 30 Health Dialog *Hormone therapy is only an option for women with hormone-receptor-positive cancer.

32 Number of Women at Lower-Than-Average Risk Who Are Cancer Free at 10 Years For me, I was more willing to live with the risk of having the cancer come back than to live with difficult side effects, long-term side effects, from the chemo and sit there going, And maybe I didn t need it at all. Betsy C. *Hormone therapy is only an option for women with hormone-receptor-positive cancer. Additional treatment can also improve survival, but it has a smaller impact on the chance of death from breast cancer than it has on the chance of cancer coming back. In part, that s because not all recurrences are life threatening, and also because many women with breast cancer die of other causes, such as heart disease, that aren t necessarily related to their cancer. Comparing Treatments 31

33 Working with Your Care Team Information in this chapter includes: Shared Decision-Making Your Care Team Shared Decision-Making In some medical situations there is a clear, right answer, and your doctor can tell you exactly what s best to do. In other situations for example, with breast cancer there are different choices that are reasonable. What s best depends on how you feel about the good and bad things that might happen with each choice. With breast cancer, you have time to work with your doctor to find the treatment that is best for your health and that makes sense with the way you live. Working with your healthcare providers to make decisions about your care that take your preferences into consideration is called shared decision-making. There are many reasons for getting involved in your healthcare. Shared decision-making can help you: Get more out of conversations with your doctors Feel more satisfied with your healthcare Get the type of medical care you want Avoid treatments or side effects you don t want Gain a feeling of control over your life Shared Goal Shared decision-making starts with a shared goal: keeping you healthy with care that s right for your needs. To get the right care, you and your doctor need to talk about your personal health goals and what you re able to do to protect or improve your health. Getting good care requires good communication between you and your doctor. 32 Health Dialog

34 Shared Effort Shared decision-making also includes shared effort. Part of your doctor s job is to explain your condition and treatment choices and listen carefully to your concerns. Your job is to prepare your questions, make sure you understand the answers, and help your doctor understand what is important to you. Shared effort means that you: Educate yourself about the medical condition(s) you have, as well as any health problems you may be at risk for in the future Talk clearly and openly with your doctor about your health and habits Ask questions until you understand the answers Use your time with your doctor wisely Work with your doctor to make your healthcare decisions Follow through on the care plan you choose together If you have trouble following through, be sure to let your doctor know so that you and your doctor can figure out an approach that works for you. Your Care Team There are many medical specialists involved in treating breast cancer. The professionals who work with you will vary depending on your condition and where you receive treatment. The table on the next page lists professionals who may be part of your care team. Working with Your Care Team 33

35 Breast Cancer Healthcare Professionals Medical Oncologist Medical Social Worker Nurse Breast Specialist Oncology Nurse Pathologist Plastic Surgeon Radiation Oncologist Radiologist Surgeon Surgical Oncologist A doctor who specializes in diagnosing cancer and treating it with drugs such as chemotherapy, hormone therapy, and biological therapy. A professional trained to talk with people who have cancer and their families about emotional and physical needs and to find them support services. A registered nurse or nurse practitioner with special training in breast health who provides information and support to women facing decisions about treating breast cancer. A registered nurse or certified nurse practitioner with special training in the care of cancer patients. A doctor who is trained to identify cancer by examining tissue samples and fluids using a microscope and laboratory tests. Pathologists findings help diagnose cancer, estimate how the cancer may behave in the future, and predict how the cancer may respond to different treatments. A doctor who does breast reconstruction surgery to re-create the breast after mastectomy. Also called reconstructive surgeon. A doctor who specializes in treating cancer with radiation therapy. A doctor who examines x-rays, mammograms, ultrasounds, and other imaging tests to look for cancer and other conditions. A doctor who does surgery to remove cancer tumors and lymph nodes; may be a general surgeon or specialized breast surgeon. A doctor who specializes in surgery to remove cancer, including lymph node surgery. 34 Health Dialog

36 Making Your Decision Information in this chapter includes: Making the Best Decision for You Working with Your Doctor Your preferences are central to your decision about whether to have additional treatment. Some women are more willing to live with the possibility that cancer may come back than to live with the possibility of side effects or long-term harms of additional treatment. Other women want to do everything possible to lower their risk of cancer coming back and are less concerned about possible side effects. It s important to realize that no decision can guarantee the results you want. But many women say that being actively involved in their medical decisions helps them feel better, regardless of what happens in the future. Making the Best Decision for You Once you have the information you need, think about the possible benefits and side effects of additional treatment. Thinking about your answers to the following questions may also help you sort out what s most important to you: How worried are you about your breast cancer coming back? How important is the amount of benefit you might get from treatment? How worried are you about the serious complications? How bothersome would side effects be? Are the benefits worth the side effects and risks? In doing the research and being a partner in your treatment decisions and your treatment itself, you do feel more in control. Alice L. Making Your Decision 35

37 Working with Your Doctor Making a decision with your doctor may seem easier said than done but the idea is to work together, not to make your decision all alone. Your doctor can help you understand the medical facts about your situation, such as: What is the chance of cancer coming back? How much might treatment reduce that chance? What types of side effects are you likely to have? What are the unlikely, but serious, side effects? Can these side effects be treated? Once you have the information you need, think about the possible benefits and side effects of additional treatment and which are most important to you. Talk with your doctor about your feelings so that together you can make the decision that s right for you. Some women find it easier to decide after getting a second opinion. But it is also reasonable to make your decision with one doctor. There s no right way or right number of opinions you need to make a good decision. 36 Health Dialog

38 Definitions of Medical Terms (Adapted from the National Cancer Institute s Dictionary of Cancer Terms, adjuvant therapy: biological therapy: biopsy: chemotherapy: clinical trial: hormone receptor: Treatment given in addition to surgery to increase the chances of a cure. Adjuvant therapy may include hormone therapy, chemotherapy, and biological therapy. Treatment that targets cancer cells that make too much of a protein called HER2/neu. Trastuzumab (Herceptin ) is the biological therapy available to women with early-stage breast cancer that is HER2/neupositive. Other biological therapies are being tested in clinical trials. The removal of cells or tissues for examination under a microscope. Treatment that involves taking medications that target cancer cells. Some are taken by mouth and others are injected by needle directly into the bloodstream over the course of a few hours. The medications enter the bloodstream and can kill cancer cells throughout the body. Chemotherapy often causes side effects. A type of research study that tests how well new medical treatments or other interventions work in people. Such studies test new methods of screening, prevention, diagnosis, or treatment of a disease. The study may be carried out in a clinic or other medical facility. Clinical trials are helping doctors find out more about long-standing hormone therapy and chemotherapy treatments for example, which medications, doses, and treatment schedules are best. Also called clinical study. A protein on the surface of a cell that binds to a specific hormone. Some breast cancer cells have estrogen and/or progesterone receptors. These cancer cells are often responsive to treatment with hormone therapies such as tamoxifen. Definitions of Medical Terms 37

39 hormone therapy: local treatment: lymph nodes: metastatic cancer: ovarian ablation: ovarian suppression: radiation therapy: Treatment that blocks or removes hormones. To slow or stop the growth of breast cancer, hormone therapies may be given to block the body s natural hormones. May also be called endocrine therapy. Treatments such as surgery and radiation that treat cancer in the breast and breast area only, including the lymph nodes under the arm. Local treatments do not treat cancer cells that may have spread to other parts of the body. Also called local therapy. Small clusters of tissues that act as security checkpoints to help defend the body from the spread of infections and cancer. Cancer that has spread from one part of the body to another. Tumors formed from cells that have spread are called secondary tumors and contain cells that are like those in the original tumor. Permanently stopping the production of estrogen in the body by either surgery to remove the ovaries or radiation to the ovaries. Menopause occurs immediately and is permanent. This procedure also causes permanent infertility. Reducing the amount of estrogen made by the ovaries by taking medication. Premenopausal women who take this medicine will enter menopause. For some women, medically induced menopause is permanent, even if they stop taking the medicine. Other women who stop taking the medicine will start having periods again and may be able to have children. The use of high-energy x-rays to kill cancer cells. Radiation is a local therapy used to kill cancer cells that may remain in the breast area after surgery. 38 Health Dialog