EARLY-STAGE BREAST CANCER

Transcription

1 A SHARED DECISION-MAKING PROGRAM EARLY-STAGE BREAST CANCER Choosing your surgery BCS001B V04

2 EARLY-STAGE BREAST CANCER Choosing your surgery 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. BCS001B V04

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4 Contents About This Booklet and Video About Shared Decision-Making Programs... 4 Introduction... 6 Diagnosis and Decisions... 8 About Breast Cancer What Is Breast Cancer?... 9 Pathology Reports Breast Cancer Surgery Your Choices for Surgery Mastectomy Lumpectomy and Radiation Lymph Node Surgery Making Your Decision Getting Second Opinions Comparing Treatments Questions for Your Doctor Making Your Decision Working with Your Healthcare Team Working with Your Doctor Your Healthcare Team Definitions of Medical Terms For More Information 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. The care, treatments, or tests described in this program may not be covered by your health plan. If 4 Health Dialog

6 you have questions about whether your health plan covers a particular treatment or test, 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 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 treat their breast cancer. They received a small fee for their time. They do not profit from recommending any treatment or self-care strategy. Because of limits on program length, the mix of comments about both good and bad treatment experiences is not the same as the mix of treatment results in the general population. A range of comments was included to show how women made their treatment decisions and what it is like to experience various treatment results. About Shared Decision-Making Programs 5

7 Introduction About This Decision You have a choice in breast cancer surgery. Whether you have mastectomy (removal of the breast) or lumpectomy (removal of the tumor) with radiation, it will not make a difference in how long you live. But there are other important differences between the surgeries. How you feel about those differences is key to which treatment will be best for you. This booklet is intended to support you in making a decision about breast cancer surgery. The goal is to help you sort out how you feel about the differences between mastectomy and lumpectomy with radiation. Is This Information for You? This booklet is for women with early-stage invasive breast cancer (Stages I and II) who are able to choose either mastectomy or lumpectomy. It is not intended for women with certain medical conditions that may limit or otherwise influence their treatment options. These include: Pregnancy Health problems that make anesthesia or surgery lifethreatening DCIS (ductal carcinoma in situ) LCIS (lobular carcinoma in situ) Inflammatory breast cancer. The program is also not for women with cancer in certain locations. This includes women with: Tumors fixed to the chest wall Cancer in more than one part of the breast Cancer in lymph nodes near the collarbone Cancer with extensive growth in underarm lymph nodes Cancer that has spread beyond the breast and lymph node area. 6 Health Dialog

8 Women who have breast cancer that is related to genetic mutations that increase the risk of breast cancer (BRCA1 or BRCA2) may have to consider other factors when choosing their treatment. These mutations increase the risk of developing cancer in either breast. 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. Introduction 7

9 Diagnosis and Decisions You Have Time When you first learn you have breast cancer, it s natural to want to have it removed as quickly as possible, but you have time. Breast cancer is not a medical emergency. Most women can take several weeks to make their decisions. Unless your doctor says you must act quickly, you can take time to talk with healthcare providers, family, and friends to figure out the treatment that s right for you. What Decisions Do You Need to Make? Most women with early-stage breast cancer face the same three basic decisions: What type of surgery to have mastectomy or lumpectomy and radiation Whether to have breast reconstruction (and when) if you decide to have a mastectomy Whether to take additional medications (chemotherapy, hormone therapy, or the biological therapy, trastuzumab [Herceptin ]) to reduce the chance of the cancer coming back. This booklet focuses specifically on the decision about what type of surgery to have. because we know that the chances of surviving breast cancer are exactly the same whether you have a mastectomy or whether you have a lumpectomy and radiation, a woman s preference for those treatments becomes very important in making the decision. Monica Morrow, MD 8 Health Dialog

10 What Is Breast Cancer? In this chapter: Where Does Cancer Develop in the Breast? How Is Breast Cancer Treated? Normally, cells in the body grow, divide, and die in an orderly way. Sometimes, however, certain breast cells can become abnormal and grow out of control. Breast cancer is a disease in which breast cells grow out of control and form a tumor. Where Does Cancer Develop in the Breast? The main parts of the breast are: Lobules that make milk Ducts that carry milk to the nipple Fatty tissue. If the abnormal cells break through the duct into nearby breast tissue, they are called invasive breast cancers. The information in this booklet applies to women with early-stage invasive breast cancers. Breast Anatomy Axillary lymph nodes Lobules Ducts Most breast cancers start with cells that line the ducts. The cells can grow abnormally and pile up inside the ducts. What Is Breast Cancer? 9

11 Invasive Breast Cancer Cancer cells Lobule Abnormal cells that break through the ducts are called invasive breast cancers. The primary tumor is the place where cancer starts. It can get bigger and it can spread. It can invade the skin on the breast or muscle on the chest wall. It can also spread beyond the breast area to other parts of the body. All breast cancers do not behave the same way. Some grow slowly and never spread beyond the breast. Others quickly spread to distant parts of the body. A woman may have a large tumor that doesn t spread, or a small tumor that does spread. Other breast cancers fall somewhere between these extremes. Whether your cancer spreads quickly, slowly, or not at all does not change your surgery choices. Mastectomy and lumpectomy with radiation are equally good treatments for most early-stage invasive breast cancers. In some cases, the size or location of a tumor can indicate if lumpectomy is possible. If you have a needle biopsy, the size of the tumor may be estimated based on your mammogram and your doctor s physical exam. If you have a surgical biopsy, the size of a tumor is described in the pathology report. You can learn more about how the size, location, and other characteristics of a breast cancer tumor can influence treatment choices in the Pathology Reports chapter on page Health Dialog

12 How Is Breast Cancer Treated? Breast cancer can be treated in two ways: Locally, which means in the breast and breast area Systemically, which means throughout the whole body. The tables on the next page describe local and systemic treatments for breast cancer. Although surgery is traditionally done first, local and systemic therapies can be used in different orders, too. For example: One woman may have lumpectomy first, followed by radiation to treat the breast area, and then have chemotherapy, hormone therapy, or biological therapy to treat her whole body. Another woman might have chemotherapy before she has radiation. This may be done to learn how the cancer cells respond to certain medications. Another woman with a larger tumor may have chemotherapy, hormone therapy, or biological therapy first to try to shrink the tumor so that she can have lumpectomy. When these drugs are given before surgery, it is called neoadjuvant therapy. This booklet focuses on situations in which breast surgery is the first treatment. There are two parts to breast cancer treatment. The first part is to get rid of cancer in the area of the breast, which is local therapy.... The second part of treatment is to prevent cancer from coming back elsewhere in the body. To do that, we need a treatment that affects the entire body.... And that s systemic therapy. Monica Morrow, MD What Is Breast Cancer? 11

13 Local Treatments for Breast Cancer Systemic Treatments for Breast Cancer Mastectomy Surgery to remove the breast; may or may not be followed by breast reconstruction. Chemotherapy Medications are given to kill cancer cells that may have spread throughout the body. Lumpectomy Radiation Therapy Surgery to remove the tumor with a border of healthy tissue around it. Radiation used to kill any cancer cells that may be left in the breast area; almost always used after lumpectomy and sometimes used after mastectomy. Hormone Therapy Biological Therapy Medications (such as tamoxifen or aromatase inhibitors) are given to stop, or slow, the growth and spread of breast cancer cells that have receptors for the estrogen and progesterone hormones. Trastuzumab (Herceptin ) is a medication given to target breast cancer cells that have too much of a protein called HER2/neu. Herceptin can be combined with chemotherapy or given alone. Other biological therapies are being tested in clinical trials. 12 Health Dialog

14 Pathology Reports In this chapter: What Is a Pathology Report? Pathology Report and Treatment Decisions Key Parts of a Pathology Report What Is a Pathology Report? Following breast biopsy or surgery, the doctor sends the breast tissue and perhaps lymph node tissue that was removed to a pathologist. The pathologist examines the samples and writes a report describing the characteristics of the cancer. In addition, other tests may also be done to the tissue. These results are often in separate reports. Pathology reports are usually written in technical language. Your doctor can help you understand what your report means. If you become familiar with key items in the pathology report (listed on the next page), you can be better prepared to have a valuable discussion about your treatment decisions. Pathology Report and Treatment Decisions When making a decision about breast cancer surgery, the most useful information in the pathology report is the size of the tumor. Sometimes, the size of a tumor or where it is located can make it difficult to do a lumpectomy. For example, if the tumor is large compared with the size of the breast, a lumpectomy may leave the breast noticeably deformed. Even so, most women with early-stage breast cancer can choose either lumpectomy or mastectomy. Other characteristics described in the pathology report are more important when making other treatment decisions, such as whether to have chemotherapy, hormone therapy, or biological therapy (Herceptin ). Your doctor may also recommend a gene assay, called Oncotype Dx, which is a test of genes within a tumor. This test can estimate the risk of cancer coming back over 10 years. It is being used to help doctors and patients make decisions about risks and benefits of additional treatments, such as chemotherapy. Pathology Reports 13

15 Oncotype Dx is currently only approved for women with Stage I or II cancer that is estrogen-receptor positive. It s not for women who have cancer in their lymph nodes. Ask your doctor whether this test may help with your decision about chemotherapy. Keep in mind that while your pathology reports can help provide a picture of your situation, none of them can predict exactly what will happen to you in the future. If we talk about 1,000 women with a certain pathology report, we can, with some accuracy, predict the percentage of people who will be doing well at 5 years, 10 years, and 20 years later. But for any one individual, we can only give population estimates, and therefore, a sense of risk. William Wood, MD Key Parts of a Pathology Report Gross Description: This section describes the color, texture, and size of the tissue that was removed during the biopsy or surgery. Tumor Size: The pathologist will measure the size of the tumor. Usually the largest dimension is reported as the size. Margins: The surgical margin is a border of healthy tissue around the tumor. Information about the margin only applies if the surgeon removed the entire tumor during the biopsy. 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, 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. 14 Health Dialog

16 Grade (or Histologic Grade): 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. Hormone Receptor Status: 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 progesteronereceptor-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/or PR-negative. Cancer that is hormone-receptor-positive is more likely than cancer that is hormonereceptor-negative to respond well to hormone therapy such as tamoxifen and aromatase inhibitors. HER2/neu: 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 or is HER2/neupositive. About 20 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. Pathology Reports 15

17 Knowing the HER2/neu status can help your doctor determine if Herceptin is likely to be effective. Two common laboratory tests to determine if a tumor is HER2/neu-positive are IHC (immunohistochemistry) and FISH (fluorescence in situ hybridization). 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). 16 Health Dialog

18 Your Choices for Surgery For most women with early-stage invasive breast cancer, mastectomy or lumpectomy with radiation are equally good options. Having one or the other makes no difference in how long you will live. Since both choices provide the same medical outcome, your choice depends on how you feel about: How your body looks after your surgery your appearance How much time and energy your treatment involves and how much it disrupts your life The chance that your cancer might come back in the breast or breast area (local recurrence). There are some medical reasons why mastectomy can be a better choice than lumpectomy for some women, such as: Having cancer in two or more separate areas of the breast Being pregnant or having another medical condition that makes the use of radiation inappropriate or unsafe (this includes having had radiation to the breast in the past) Having had a lumpectomy that could not remove the entire tumor along with a border of healthy tissue around it. There are also some cosmetic reasons that may make mastectomy a better choice but they are somewhat controversial. Doctors used to believe that mastectomy, and possibly reconstruction, could provide better cosmetic results when: A tumor was large compared with the size of the breast, and much of the breast would be removed A tumor was so close to the nipple that the nipple would have to be partly or completely removed The breasts were very large, and radiation might cause breast shrinkage and an asymmetrical (uneven) appearance. Your Choices for Surgery 17

19 These conditions still make mastectomy a better choice for some women, but surgeons today often have ways of overcoming these problems. If you think any of these issues apply to you, talk to your cancer surgeon, who will perform the lumpectomy or mastectomy, as well as a plastic surgeon, who will reconstruct the breast. 18 Health Dialog

20 Mastectomy In this chapter: What to Expect After Mastectomy Appearance After Mastectomy Breast Prosthesis Breast Reconstruction Local Recurrence After Mastectomy Some women have breast reconstruction at the same time as mastectomy. In this case, the plastic surgeon doing the reconstruction proceeds with the reconstruction once the mastectomy is completed by the cancer surgeon. Having reconstruction at the same time as mastectomy will make the operation time longer. In some cases, the recovery may be longer too. Mastectomy is a long-established treatment for breast cancer. In the past, radical mastectomy removed the entire breast, lymph nodes in the underarm, and a major muscle in the chest wall. Today, a simpler procedure leaves the chest muscle intact and allows more options for breast reconstruction. Mastectomy is done under general anesthesia so a woman is not aware of the surgery and feels no pain during the operation. The surgeon typically uses one incision, or cut in the skin, to remove the entire affected breast and some lymph nodes under the arm. The mastectomy surgery (without reconstruction) usually takes several hours. I felt the best thing to do, and the smartest thing, was just to get rid of it. It s bad. Don t take chances. I knew me. I could not live every day wondering, Oh, is there any left? Tina, chose mastectomy Well, my feeling was that mastectomy wasn t a real big thing. Breasts get in the way. You bump into things. My boyfriend didn t care whether or not I had them. I can do without them. Viola, chose mastectomy Mastectomy 19

21 What to Expect After Mastectomy Most women will stay in the hospital at least one night or longer if they have certain types of breast reconstruction. Most women are able to eat regular food and walk around the next day. Immediately after surgery, there can be discomfort moving the arm on the side of the mastectomy. For a few days, a tube called a drain may remain in the chest to carry away fluid that can build up after surgery. Major soreness lasts usually 2 or 3 days, although feelings of pulling and tightness may continue for some time. Discomfort varies based on the type of lymph node surgery done, or if breast reconstruction is done at the same time (which can cause more discomfort and possibly a longer recovery). Recovery is different for every woman and depends on many things, like the number and extent of surgeries (e.g., axillary lymph node dissection in addition to mastectomy). Recovery also depends on a woman s overall health and if she will need rehabilitation. Following mastectomy, some women have breast pain, premenstrual-type breast soreness, or other sensations as if the breast were still there. In about 15% of women, the pain or sensations may persist for years. Appearance After Mastectomy Naturally, most women are concerned about how they will look after mastectomy. You may find it helpful to see photos and to talk with women who have had mastectomies. Mastectomy After mastectomy, the chest wall is flat with a scar. 20 Health Dialog

22 Ask your healthcare provider about breast cancer support groups in your area. You may also want to see the For More Information section of this booklet. Some women choose to do nothing to change how they look after mastectomy. Other women use a prosthesis or have breast reconstruction. How do I feel about my body now? I love my body. I don t dislike who I am, and it doesn t bother me because I d just as soon not wear the prosthesis. Viola Breast Prosthesis A removable breast form is called a breast prosthesis. Most are made of silicone gel, foam, fiberfill, or other materials that feel similar to a natural breast. Some breast forms can be worn with a regular bra. Others require a special bra with a pocket. There are also breast forms that stick to the skin, so a bra isn t needed. Breast forms come in different sizes and shapes to match the natural breast. When worn under clothing or with a special swimsuit, a prosthesis creates a naturallooking shape. Breast Reconstruction Breast reconstruction is surgery to recreate a breast shape after mastectomy. Some types of reconstruction involve more than one procedure. For example, creating a nipple or making the breasts match requires additional procedures. For some women, having reconstruction is an important part of their physical and emotional recovery. For other women, it isn t that important. Breast reconstruction can be done at the same time as the mastectomy, or it can be delayed and done months or years later. If you are having radiation therapy after mastectomy, it s important that you speak to both your plastic surgeon and radiation oncologist about the best timing for your reconstruction. That s because complications can occur when radiation is done after reconstruction. Mastectomy 21

23 If you think you might want to have reconstruction at the same time as the mastectomy, or at a later time, your cancer surgeon can refer you to a plastic surgeon who can explain your reconstruction choices. Be sure to speak with the plastic surgeon before you schedule your mastectomy. I love this part of me, and someone offered me the chance to have it back. Tina, chose breast reconstruction Local Recurrence After Mastectomy Because mastectomy removes the entire breast, cancer cannot come back in the breast tissue that s been removed. Cancer can come back in the breast area, usually in the scar or surrounding skin. This is called local recurrence. Local recurrence is more likely to happen in the first few years after mastectomy than later on. Whenever it occurs, it can sometimes be difficult to treat. About half of these recurrences can be treated successfully. On average, after 10 years, about 8 out of 100 women who have mastectomy will have this type of local recurrence. That means that about 92 out of 100 women will not. The chance is the same whether or not a woman has breast reconstruction. Number of Women Who Have Cancer Come Back in Breast or Breast Area Over 10 Years Mastectomy Alone or with Reconstruction Surgery Alone Surgery + Radiation 8 out of out of 100 These estimates are average risks. Some women may have a lower risk of local recurrence after mastectomy, such as 1% 2%. Others may have a higher risk, such as 20% 40%. Radiation in addition to mastectomy can reduce their risk. However, for most women who are at low to average risk, the benefit of radiation is not worth the possible short-term and long-term side effects (for the possible side effects of radiation therapy, see the Lumpectomy and Radiation chapter on page 24). 22 Health Dialog

24 For women at higher risk (such as those who have four or more positive lymph nodes and/or tumors larger than 5 centimeters), studies show that using radiation after mastectomy can significantly reduce the risk of recurrence and help them live longer. Researchers are investigating whether women with fewer positive lymph nodes who have mastectomy can also benefit from radiation. Mastectomy 23

25 Lumpectomy and Radiation In this chapter: How Lumpectomy Is Done Surgical Margins Lumpectomy and Tumor Size What to Expect After Lumpectomy Radiation Therapy Appearance After Lumpectomy and Radiation Local Recurrence After Lumpectomy and Radiation How Lumpectomy Is Done Lumpectomy may be done either in a hospital operating room or in an outpatient surgery center. General or local anesthesia can be used. The surgeon makes an incision in the breast and removes the tumor along with a border of healthy tissue all around it. Lumpectomy Lumpectomy, sometimes called breastconserving surgery, has different names depending on how much normal breast tissue is removed along with the cancer. The terms wide excision, wedge resection, partial mastectomy, and quadrantectomy all refer to lumpectomy. All of these procedures usually leave the nipple intact. Lumpectomy surgery is usually followed by radiation to kill any cancer cells that may be left in the breast. Lumpectomy (or breast-conserving surgery) removes the cancer and saves the breast. The location of the scar depends on where the tumor was located. 24 Health Dialog

26 This healthy tissue is a safety zone that helps reduce the chance that any cancer cells are left behind. The healthy tissue around the tumor is called the surgical margin. The surgeon also usually removes some lymph nodes by making a second incision under the arm. I just know that it s possible to do the conservative surgery, take out the lump and surrounding tissues, and still be left with a breast. It s very important for a lot of women. June, chose lumpectomy Surgical Margins After the surgery, a pathologist examines the tissue that was removed to see if there is a margin of normal tissue around the entire tumor. Clear (Negative) Margins If the edges of the tissue are free of cancer, the margins are called clear, negative, or uninvolved. All these terms mean that the lumpectomy removed all the cancer in the primary tumor. Surgical Margins I realized that if I had a recurrence in the same breast, I would certainly have a mastectomy. But I didn t want to lose my breast if I didn t have to. And it was clear to me that I did not have to in order to feel safe personally. Joan, chose lumpectomy When surgeons do a lumpectomy, they want to be sure that the tissue they remove has a border of healthy tissue around the cancer. This border of healthy tissue, called clear or negative margins, is shown on the left in the picture above. Lumpectomy and Radiation 25

27 Positive Margins If there are cancer cells along the edges of the tissue, the margins are called positive or involved. This means that more breast surgery is needed. The second surgery is usually a short operation that can be done without an overnight stay in the hospital. About 25 to 35 women out of 100 will need a second surgery because they have positive margins after lumpectomy. That means that 65 to 75 women out of 100 will not need a second surgery. The chance of needing more surgery after lumpectomy may be higher or lower than this estimate depending on the characteristics of a woman s cancer, the surgeon s training and experience, and different hospital practices. Talk with your surgeon to find out how these factors might affect your chance of needing more surgery after lumpectomy. If getting clear margins is difficult, the doctor may recommend a mastectomy to make sure the entire primary tumor is removed. Lumpectomy is not complete until the surgeon has removed a border of cancer-free tissue around the entire tumor. Sometimes a pathologist will examine the margins during the surgery. If there are cancer cells in the margins, the surgeon can remove more tissue right away. However, it takes several days to fully examine the tissue. If the final report shows positive margins, another surgery is needed. Lumpectomy and Tumor Size Lumpectomy works best for small tumors. Women who have larger tumors may be able to have lumpectomy if they have chemotherapy first to shrink the tumor. This is called neoadjuvant chemotherapy. Among women who use this approach, one-third or more will have the tumors shrink enough to make lumpectomy possible. What to Expect After Lumpectomy Most women go home on the day of their surgery or the next day. Discomfort varies depending on how much tissue was removed, where the incision was made, and type of lymph node surgery done. Major soreness usually lasts 2 or 3 days. There may be temporary tenderness and swelling of the breast. As the breast heals, parts of the breast may harden as scar tissue forms. 26 Health Dialog

28 Most women feel able to return to their usual activities within 2 weeks or less. Radiation Therapy The x-ray energy from radiation therapy kills cancer cells that may be left in the breast. Women who have lumpectomy with radiation live as long as women who have mastectomy. Radiation therapy reduces the chance of cancer coming back in the breast and breast area. Without radiation, as many as 32 out of 100 women would have a local recurrence within 10 years of lumpectomy. Radiation lowers that risk to about 10 out of 100. Radiation therapy usually starts 4 to 6 weeks after lumpectomy, allowing the breast time to heal. Women generally have outpatient radiation treatments 5 days a week for about 6 weeks. However, some researchers are testing different approaches to radiation for certain women with smaller tumors who have lumpectomy. These newer approaches are called partial breast irradiation. Partial breast irradiation uses balloons, catheters, implanted seeds, or external beam radiation to treat just the area around the tumor, rather than the entire breast. Partial breast irradiation takes less time than traditional radiation. It can sometimes be completed in 5 days or even less. New research shows this may work as well as traditional radiation at lowering the risk of cancer coming back. However, it is still being studied in clinical trials, and doctors do not know the long-term side effects or if it works equally well for all women. What to Expect with Traditional Radiation Therapy Radiation therapy may be available at a local hospital or a special clinic. Find out how far you might have to travel for this therapy, because traditional radiation can require 30 or more visits. During the first session, the radiation team will plan exactly where to aim the radiation and what dose to give. The radiation must be directed at the same part of the breast each time. The area is marked with small permanent tattoos. Lumpectomy and Radiation 27

29 The radiation treatments each last about 5 to 15 minutes and are painless. Many women say radiation therapy is a lot like having a routine x-ray. Most women continue with their usual daily activities immediately after treatment. Near the end of a course of radiation treatments, some women receive a boost dose of radiation to make sure any remaining cancer cells are killed. Boost radiation usually comes from an external machine, like regular radiation treatments. Not everyone needs the boost dose of radiation. You go 5 days a week, Monday through Friday. The only thing you hear is like a buzzing. You don t see anything. You don t feel anything. And it s over. June Possible Side Effects of Radiation Therapy Many women have no discomfort or side effects from radiation therapy. Other women have temporary side effects that may include: Fatigue Skin reactions, such as a sunburnlike rash, which can sometimes blister A sense of heaviness in the breast Loss of appetite or nausea (less common with modern radiation techniques than with older ones). These side effects typically occur toward the end of radiation therapy and go away within weeks or months. Sometimes radiation therapy causes permanent side effects, including: Darkening of skin color (like a permanent suntan) Skin thickening A change in size in part of the breast (making it look lopsided) or the whole breast 28 Health Dialog

30 Hardening of breast tissue A change in the sensitivity of the skin over the breast. Other possible side effects are generally considered rare, or they take so long to develop that they don t have much impact on the breast cancer treatment decision. Still, they may be a concern for some women. Rare or delayed side effects of radiation include: Lung or heart problems An increased risk of rib fractures A risk of other cancers. Modern radiation techniques may be less likely than older techniques to cause heart problems. Radiation may also worsen lymphedema. You can learn more about this in the Lymph Node Surgery chapter on page 32. It was red toward the end; it did get raw. But they gave you cream to put on it. Some women have a harder time than others. Theresa Appearance After Lumpectomy and Radiation Lumpectomy removes the cancer while keeping the breast. Usually, there is a scar that may fade over time. Most women are typically pleased with the results. Sometimes there is a change in the size or shape of the breast, depending on how much tissue was removed. There can also be changes in the skin color and the hardness of the breast from radiation. In most cases, the breast appears fairly normal. Local Recurrence After Lumpectomy and Radiation After lumpectomy, cancer can come back in the scar or skin or in the remaining breast tissue. This local recurrence can happen at any time after lumpectomy, and can usually be successfully treated with mastectomy (although for some women, a second lumpectomy may be possible). Lumpectomy and Radiation 29

31 Radiation lowers the chance of local recurrence after lumpectomy: Without radiation, on average, about 32 out of 100 women would have a local recurrence within 10 years. With radiation, about 10 out of 100 women would have a local recurrence within 10 years. Number of Women Who Have Cancer Come Back in Breast or Breast Area Over 10 Years Lumpectomy Surgery Alone Surgery + Radiation 32 out of out of 100 That means that about 90 out of 100 women who have lumpectomy and radiation will not have cancer come back in the breast and breast area within 10 years. This lower chance of recurrence may also lead to a small but important difference in survival. These round number estimates are average risks. Some women may have a lower risk of local recurrence after lumpectomy closer to 20%. Others may have a higher risk closer to 60%. Radiation will reduce these risks to 5% and 15%, respectively. Chemotherapy, hormone therapy, and the biological therapy (Herceptin ) can also reduce the risk of local recurrence. This results in a few situations where women and their doctors may consider lumpectomy without radiation and use chemotherapy, hormone therapy, and/or Herceptin instead. One example is women older than 70 who are going to take tamoxifen or aromatase inhibitors (forms of systemic therapy for women with hormonereceptor-positive tumors). Studies have shown that older women who have a lumpectomy followed by hormone therapy have a slightly higher chance of local recurrence, but similar survival rates, compared to women who have lumpectomy, radiation, and hormone therapy. 30 Health Dialog

32 Some older women and their doctors may feel that the extra benefit they might get from having radiation isn t worth the time and energy and possible side effects. Women who have other serious health problems and also have a low risk of recurrence to begin with may also consider lumpectomy without radiation followed by targeted therapies, such as hormone therapy. However, for most women and their doctors, the addition of radiation makes lumpectomy a reasonable alternative to mastectomy. Lumpectomy and Radiation 31

33 Lymph Node Surgery In this chapter: What to Expect with Lymph Node Surgery Possible Side Effects of Lymph Node Surgery Lymph node surgery is usually done with both mastectomy and lumpectomy. It doesn t affect the type of surgery you choose. After the nodes are removed, a pathologist checks them to see if cancer cells have spread from the primary tumor in the breast to the lymph nodes in the underarm area. Lymph node status provides important information about how your cancer may behave in the future. You and your doctor can use this information to decide what future systemic treatments you might need if cancer has spread beyond your breast. What to Expect with Lymph Node Surgery There are two ways to remove lymph nodes so that they can be checked for cancer: Surgery to remove one or a few lymph nodes, called sentinel node biopsy More extensive surgery to remove all or most of the lymph nodes in the underarm area, called axillary lymph node dissection. Sentinel node biopsy is an option for most women whose lymph nodes do not feel enlarged on a physical exam. One advantage of sentinel node biopsy is that women who have fewer lymph nodes removed are less likely to develop some of the problems in the arm that can happen in women who have more lymph nodes removed. Because sentinel node biopsy is done through a smaller incision and removes less tissue than axillary lymph node dissection, it results in fewer infections and less pain and difficulty moving the arm after surgery. Women can also return to normal activities more quickly. 32 Health Dialog

34 Lymph Node Surgery Lymph nodes Lymph nodes are removed with both mastectomy and lumpectomy. With lumpectomy and some types of mastectomy, they are removed through a second incision in the underarm. The sentinel node approach is based on the idea that if cancer cells spread, they first reach one or a few lymph nodes, called the sentinel nodes. To find the sentinel nodes, doctors inject a dye or radioactive marker (or both) into the breast. The dye or marker travels to the node or nodes that first filter lymph fluid from the area of the tumor. These lymph nodes are then removed and examined for cancer cells. If the sentinel nodes are clear or negative, there is probably no cancer in the other nodes. More lymph node surgery is not needed. If the sentinel nodes are positive, meaning they show cancer, more lymph node surgery may be needed. The need for more lymph node surgery depends on whether you re having a mastectomy or lumpectomy, the characteristics of your cancer, and other treatments that you might receive, such as chemotherapy or hormone therapy. Sentinel node biopsy appears to be as effective as axillary lymph node dissection for identifying positive nodes and in helping with decisions about other treatments, such as chemotherapy. Lymph Node Surgery 33

35 Possible Side Effects of Lymph Node Surgery The side effects of lymph node surgery can depend on which type of surgery is done. Compared to axillary lymph node dissection, which removes all or most of the underarm lymph nodes, sentinel node biopsy causes fewer side effects. Lymph node surgery can alter sensation in the skin under the arm or on the back of the upper arm, causing discomfort, numbness, or tingling that can be temporary or permanent. My arm still feels like it s asleep with the tingling and the numbness. Viola When many lymph nodes are removed, it increases the risk of serious infection in the arm. Women who have many nodes removed should take extra precautions to avoid injuries to the arm and hand. One of the more troubling side effects of lymph node surgery is lymphedema. It is a buildup of fluid in the arm that can cause swelling and discomfort. When lymphedema occurs, it can last for a long time. It is normal to have some swelling for 6 to 8 weeks after lymph node surgery. The swelling from lymphedema can develop gradually months or even years after surgery. When radiation is used to treat lymph nodes under the arm, it may make lymphedema worse. The chance of developing lymphedema varies depending on what was done to the lymph nodes, and increases with time after surgery, so the reported number of cases varies widely. Overall, about 25 out of 100 women develop some degree of lymphedema after lymph node surgery. In many cases, the swelling is mild and goes away. The swelling persists in about 15 out of 100 women. About 4 out of 100 women who have axillary lymph node dissection develop severe lymphedema. Women who have sentinel node biopsy are less likely to have lymphedema than women who have more lymph nodes removed. 34 Health Dialog

36 Researchers are now studying the best ways to treat lymphedema. The National Lymphedema Network organization offers tips on finding lymphedema specialists and information on how to manage the condition. To reduce the chance of developing lymphedema, researchers are also studying whether it s safe to leave the lymph nodes in place in women who are at very low risk for cancer coming back, particularly for some older women. The complications of lymph node surgery, including lymphedema, can last longer than the side effects from mastectomy or lumpectomy. To reduce your risk of these side effects, talk with your doctor to find out if you are a candidate for sentinel node biopsy. Lymph Node Surgery 35

37 Getting Second Opinions Some women see another doctor to get a second opinion about their condition and treatment plan. Getting a second opinion is a way to learn more about your options and to feel secure that you ve done a complete job of exploring your choices. It can also help give you peace of mind that you are making the best decision possible. Don t worry that your doctor will be hurt if you ask for a second opinion. This is a common practice today, and it s your right as a patient. Your doctor should respect and appreciate your effort to become fully informed by hearing another opinion. These are relatively slowly growing tumors, so that days and weeks probably don t have any significant impact on health or survival. It s much more important to decide the best thing to do than to hurry to a decision. William Wood, MD Tips for Getting Second Opinions Look for a doctor who does not work closely with your doctor. It s a good idea to find a doctor who works in a different hospital, too, because hospital practices can influence doctors practices. Ask your doctor for names outside of his or her practice and hospital. Call the American Cancer Society or the American Society of Clinical Oncology. Contact your local medical society, medical schools, or other hospitals in your area. Finally, don t feel guilty if you don t want to get a second opinion. It will take time and effort, and there is nothing wrong with having one opinion if you are comfortable with it. 36 Health Dialog

38 Comparing Treatments In this chapter: How the Treatments Are Similar How the Treatments Are Different Appearance Time and Energy Local Recurrence How the Treatments Are Similar You will live the same length of time whether you choose mastectomy or lumpectomy with radiation. The surgeries are also similar in terms of how much discomfort you may feel, the chance of complications from the surgery itself, and the emotional effects. Women who have surgery to remove all or most of the lymph nodes in the underarm area feel the same level of discomfort whether they have mastectomy or lumpectomy. That s because the lymph node surgery is what causes most of the discomfort. Women who have sentinel node biopsy, on the other hand, usually feel more discomfort and pain with mastectomy than with lumpectomy. Possible complications of either breast surgery include: Infection Bleeding Fluid buildup in the wound (seroma). The chance for these problems is similar for both mastectomy and lumpectomy. Problems such as serious bleeding or infection occur in less than 5 out of 100 women, regardless of which surgery they have. Women who have breast reconstruction at the same time as mastectomy have more discomfort and may have more complications compared with women who have mastectomy alone. Both surgeries cause similar emotional effects. About 25 out of 100 women are significantly anxious or depressed or have sexual problems after either surgery. Keep in mind that: Being involved in your decision can help ease the emotional impact of breast cancer treatment. Comparing Treatments 37

39 Emotional and sexual effects are not limited to breast cancer surgery. Women who have other serious illnesses or who are recovering from other kinds of surgery may have similar emotional and sexual problems often due to changes in their bodies and the emotional stress of cancer and related treatments. The type and results of the lymph node surgery also affect women in similar ways, regardless of which breast surgery they choose. Women who have sentinel node biopsy and have a positive sentinel node may need additional surgery to remove more lymph nodes. How the Treatments Are Different Mastectomy and lumpectomy with radiation are different in three important ways: How your breast looks after your surgery your appearance. How much time and energy your treatment involves and how much it disrupts your life. The chance that your cancer might come back in the breast or breast area (local recurrence). How you feel about each of these differences will help determine which treatment is right for you. Appearance Mastectomy Mastectomy removes the entire breast. Your appearance afterward will depend on whether you choose to have breast reconstruction. If you have breast reconstruction, you will have a permanent breast form that looks natural in clothing and may also look natural when you are naked. If you do not have reconstruction, your chest wall will be flat, with a scar, and you may or may not choose to wear a prosthesis. Lumpectomy Lumpectomy saves the breast. Your appearance how the breast looks afterward will depend on how much breast tissue was removed. In most cases, the breast will look fairly normal. If a lot of tissue was 38 Health Dialog

40 removed, it may look different than the other breast. Radiation can cause some changes in the skin of the breast or make the breast feel hard. Time and Energy Mastectomy The time and energy involved with mastectomy depends on whether you have breast reconstruction, whether you have radiation, and on the type and results of your lymph node surgery. If you do not have breast reconstruction, mastectomy usually involves one operation. If you have reconstruction, it may involve multiple procedures and a longer recovery period than mastectomy without reconstruction. If you have a large tumor or have many positive lymph nodes, you may need radiation, which can take up to 6 weeks. Women who need radiation and want reconstruction may need to schedule the reconstruction after the radiation. Lumpectomy The time and energy involved with lumpectomy depends on whether the initial lumpectomy had clear margins and on the type of radiation that is used. If the margins are clear (negative), you will need no further surgery. About 65 to 75 out of 100 women have clear margins after lumpectomy. If the margins are not clear (positive), you may need another surgery. This is often done without a hospital stay. About 25 to 35 out of 100 women have positive margins after lumpectomy and need another surgery. Radiation can be completed in as little as 5 days or less or take up to 6 weeks, depending on what type is used. Comparing Treatments 39