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Illness & Conditions - Medical Care DecisionsBreast Cancer: What Should I Do if I'm at High Risk?You may want to have a say in this decision, or you may simply want to follow your doctor's recommendation. Either way, this information will help you understand what your choices are so that you can talk to your doctor about them. Breast Cancer: What Should I Do if I'm at High Risk? Get the facts Your optionsIf you are at high risk for breast cancer, your choices are:
Key points to remember
FAQs
How do you know if you are at high risk for breast cancer?Most women are not at high risk for breast cancer. But some women have a high risk because they have what is called a family history of breast cancer. That means they have one or more relatives with breast cancer. If anyone in your family has had breast cancer, your doctor can help you figure out how much that affects your chances of getting breast cancer yourself. Your risk depends on what kind of family history you have. For example, having one relative with breast cancer gives you a family history. But if you have two close relatives—like your mother and your sister—with breast cancer, and one of them was diagnosed before age 50, your family history is stronger and your risk of getting breast cancer is higher. A few women are at very high risk because they have inherited a gene change that makes them very likely to get breast cancer. The only way to find this out is to have a breast cancer gene test. The test looks for changes, or mutations, in two genes that are related to breast and ovarian cancer. The two genes are called BRCA1 and BRCA2 (BRCA stands for BReast CAncer). Changes in these BRCA (say "BRAH-kuh") genes are rare, but having one greatly increases your chances of getting breast and ovarian cancer. These women usually have a strong family history of breast cancer, also. To understand the effect that a family history of breast cancer can have on your chances of getting the disease, consider the numbers below. It’s important to remember that everyone’s case is different and that these numbers may not show what will happen in your case.
Sometimes women think that their risk is higher than it really is. These women may end up having drastic surgery that they don't need. That's why it's very important to know how high your personal risk for breast cancer is. Talk to your doctor. Having a BRCA gene test may be an option for some women to find out their risk, but it's not for everyone. What are your choices if you're at high risk?When you know how high your risk is, you can begin to think about what steps you want to take—if any—to prevent cancer. These are the choices:
The choices will be different depending on how high your risk is. For example, a woman with a BRCA gene change may want to think about having both of her breasts and her ovaries removed because she is at much higher risk. But surgery may not be a good choice for a woman who has a family history with no gene change. Her risk is not as high, and surgery might be too drastic for her. You may choose more than one of these options. You may choose only to have extra checkups and testing. Your decision may change over time. For example, some women will decide to choose extra checkups and testing now and think about surgery later, after they have had children and have finished breast-feeding. What does it mean to have extra checkups and testing?All women should have regular checkups and tests for breast cancer. But if you are at high risk, you may need to do this more often. You may also need to start younger, or have additional screening tests. This is sometimes called "intensive surveillance" or "intensive screening." The goal is to find breast cancer as early as possible so that it can be treated. Talk with your doctor about the screening tests and schedules that would be best for you. For high-risk women, this may mean: How can medicines prevent breast cancer?Tamoxifen (say "tuh-MOK-suh-fen") is a medicine that blocks the effect of estrogen on breast cancer cells and normal breast cells. This lowers the risk of breast cancer in women who are at high risk. It is most helpful for women who are younger than 50, because it has side effects, such as blood clots in the lungs and legs, that increase with age. 4 Raloxifene (say "ral-OX-ih-feen") has been shown to help prevent breast cancer in postmenopausal women who had osteoporosis and were taking this medicine. This medicine also has side effects. 4 Aromatase inhibitors also lower the amount of estrogen made in the body in postmenopausal women. The side effects include osteoporosis and problems with memory, talking, and learning. 4 Your doctor can help you decide if taking one of these medicines is right for you. How can having your breasts removed prevent breast cancer?Having your breasts removed greatly lowers your chances of getting breast cancer, because it removes almost all of the breast tissue. But it is not yet known whether this surgery is better than having careful screening and then treatment if any breast cancer develops. 5 An operation to remove a breast is called a mastectomy (say "mass-TEK-tuh-mee"). When both breasts are removed, it is called a bilateral mastectomy. Bilateral means "both sides." Some women have their breasts reconstructed during the same operation. Breasts can also be reconstructed later. Having your breasts removed does not guarantee that you won't get breast cancer. This is because no operation can remove every bit of breast tissue. How can having your ovaries removed prevent breast cancer?Having your ovaries removed lowers your chances of getting breast cancer. The ovaries produce a woman's eggs as well as certain hormones , like estrogen. Estrogen seems to increase a woman's chances of getting breast cancer. That may be why having your ovaries removed lowers your chances. Experts recommend that women who have BRCA gene changes consider surgery to remove their ovaries and fallopian tubes when they are done having children, or between the ages of 35 and 40. 6 This decreases their risk of getting cancer in the breasts and the ovaries. The surgery to remove the ovaries is called an oophorectomy (say "oh-uh-fuh-REK-tuh-mee"). When your ovaries are removed, you can no longer get pregnant. Also, your body's supply of estrogen and other hormones will end, and you will go into early menopause . This may also put you at long-term risk for osteoporosis and heart disease. 7 The menopause symptoms after this surgery may include hot flashes, mood swings, weight gain, urinary problems, vaginal dryness, and pain with sexual intercourse. If you have serious symptoms, talk with your doctor about taking a short course of hormone therapy . This can help with symptoms but will not make them go away completely. 6 Why might your doctor recommend one option over another?You and your doctor can't begin to decide what steps you should take to prevent breast cancer until you know how high your personal risk is. If you don't know how high your risk is, talk to your doctor. He or she will help you find out. The higher your risk, the more you and your doctor may want to consider surgery. Sometimes women think that their risk is higher than it really is. These women may end up having drastic surgery that they don't need. That's why it's very important to know how high your personal risk for breast cancer is. Talk to your doctor. Compare your options Compare
Get extra
checkups and testing only
Get extra
checkups and testing only
Take medicine (such as tamoxifen or raloxifene)
Take medicine (such as tamoxifen or raloxifene)
Have your breasts removed
Have your breasts removed
Have your ovaries removed
Have your ovaries removed
Personal stories Are you interested in what others decided to do? Many people have faced this decision. These personal stories may help you decide. Personal stories about preventing breast cancerThese stories are based on information gathered from health professionals and consumers. They may be helpful as you make important health decisions. After I got over the shock of finding out that I have a BRCA gene change, I decided I would have surgery. But which one? What a tough choice—have my breasts removed or go into early menopause by having my ovaries removed. I finally chose to have my ovaries removed. I feel like that was the best step for me. My husband and I were done having children. Menopause hasn't been so bad. I was going to have to go through it sometime anyway. And I'd rather be in menopause than have cancer. Selah, age 39 I have a fairly strong family history of breast cancer, but I don't think surgery is for me. I am taking tamoxifen to prevent cancer. Adrianna, age 34 I have tested positive for a BRCA gene change, so my risk for cancer is very high. I'm determined to do everything I can to keep from getting breast and ovarian cancer. I recently had my ovaries removed, and I am scheduled to have my breasts removed later this year. Just having taken that first step has made me feel much better about my future. Fran, age 40 Even though I have tested positive for a BRCA gene change, I'm just not ready to take a drastic step like cutting off my breasts or removing my ovaries and going into menopause. I'm planning to have a family, so I'm choosing intensive surveillance, at least for now. Maybe I'll reconsider in a few more years, but for now, having frequent checkups and testing is enough. June, age 25 What matters most to you? Your personal feelings are just as important as the medical facts. Think about what matters most to you in this decision, and show how you feel about the following statements. I’m very worried about getting breast cancer. Not important Somewhat important Very important
I’m more worried about ovarian cancer than breast cancer. Not important Somewhat important Very important
I’m worried about both breast and ovarian cancer. Not important Somewhat important Very important
I am not done having children. Not important Somewhat important Very important
I don’t want to go into menopause any earlier than I have to. Not important Somewhat important Very important
I have a strong desire to keep my breasts. Not important Somewhat important Very important
The thought of any kind of surgery scares me more than the thought of getting cancer. Not important Somewhat important Very important
I’m not ready to take medicine or have surgery. Not important Somewhat important Very important
My other important reasons: Not important Somewhat important Very important
Where are you leaning now? Now that you've thought about the facts and your feelings, you may have a general idea of where you stand on this decision. Show which way you are leaning right now. Having extra checkups and testing NOT having extra checkups and testing Leaning toward Undecided Leaning toward
Taking medicine NOT taking medicine Leaning toward Undecided Leaning toward
Having my breasts removed NOT having my breasts removed Leaning toward Undecided Leaning toward
Having my ovaries removed NOT having my ovaries removed Leaning toward Undecided Leaning toward
What else do you need to make your decision? Check the facts
1.
If someone in your family has breast cancer, does it mean that your chances of getting it are very high?
2.
When you find out that your chances of getting breast cancer are very high, do you need to make a quick decision about what to do?
3.
If you have inherited a BRCA gene change, are your chances of getting breast cancer higher than if you just had a strong family history of breast cancer?
Decide what's next
1.
Do you understand the options available to you?
2.
Are you clear about which benefits and side effects matter most to you?
3.
Do you have enough support and advice from others to make a choice? Certainty
1.
How sure do you feel right now about your decision? Not sure at all
Somewhat sure
Very sure
2.
Check what you need to do before you make this decision.
3.
Use the following space to list questions, concerns, and next steps. Your Summary Here's a record of your answers. You can use it to talk with your doctor or loved ones about your decision. Your decisionNext steps Which way you're leaning How sure you are Your comments
Your knowledge of the factsKey concepts that you understood Key concepts that may need review Getting ready to actPatient choices Credits and ReferencesCredits
References
Citations
You may want to have a say in this decision, or you may simply want to follow your doctor's recommendation. Either way, this information will help you understand what your choices are so that you can talk to your doctor about them.
Breast Cancer: What Should I Do if I'm at High Risk?Here's a record of your answers. You can use it to talk with your doctor or loved ones about your decision.
1. Get the factsYour optionsIf you are at high risk for breast cancer, your choices are:
Key points to remember
FAQs
How do you know if you are at high risk for breast cancer?Most women are not at high risk for breast cancer. But some women have a high risk because they have what is called a family history of breast cancer. That means they have one or more relatives with breast cancer. If anyone in your family has had breast cancer, your doctor can help you figure out how much that affects your chances of getting breast cancer yourself. Your risk depends on what kind of family history you have. For example, having one relative with breast cancer gives you a family history. But if you have two close relatives—like your mother and your sister—with breast cancer, and one of them was diagnosed before age 50, your family history is stronger and your risk of getting breast cancer is higher. A few women are at very high risk because they have inherited a gene change that makes them very likely to get breast cancer. The only way to find this out is to have a breast cancer gene test. The test looks for changes, or mutations, in two genes that are related to breast and ovarian cancer. The two genes are called BRCA1 and BRCA2 (BRCA stands for BReast CAncer). Changes in these BRCA (say "BRAH-kuh") genes are rare, but having one greatly increases your chances of getting breast and ovarian cancer. These women usually have a strong family history of breast cancer, also. To understand the effect that a family history of breast cancer can have on your chances of getting the disease, consider the numbers below. It’s important to remember that everyone’s case is different and that these numbers may not show what will happen in your case.
Sometimes women think that their risk is higher than it really is. These women may end up having drastic surgery that they don't need. That's why it's very important to know how high your personal risk for breast cancer is. Talk to your doctor. Having a BRCA gene test may be an option for some women to find out their risk, but it's not for everyone. What are your choices if you're at high risk?When you know how high your risk is, you can begin to think about what steps you want to take—if any—to prevent cancer. These are the choices:
The choices will be different depending on how high your risk is. For example, a woman with a BRCA gene change may want to think about having both of her breasts and her ovaries removed because she is at much higher risk. But surgery may not be a good choice for a woman who has a family history with no gene change. Her risk is not as high, and surgery might be too drastic for her. You may choose more than one of these options. You may choose only to have extra checkups and testing. Your decision may change over time. For example, some women will decide to choose extra checkups and testing now and think about surgery later, after they have had children and have finished breast-feeding. What does it mean to have extra checkups and testing?All women should have regular checkups and tests for breast cancer. But if you are at high risk, you may need to do this more often. You may also need to start younger, or have additional screening tests. This is sometimes called "intensive surveillance" or "intensive screening." The goal is to find breast cancer as early as possible so that it can be treated. Talk with your doctor about the screening tests and schedules that would be best for you. For high-risk women, this may mean: How can medicines prevent breast cancer?Tamoxifen (say "tuh-MOK-suh-fen") is a medicine that blocks the effect of estrogen on breast cancer cells and normal breast cells. This lowers the risk of breast cancer in women who are at high risk. It is most helpful for women who are younger than 50, because it has side effects, such as blood clots in the lungs and legs, that increase with age. 4 Raloxifene (say "ral-OX-ih-feen") has been shown to help prevent breast cancer in postmenopausal women who had osteoporosis and were taking this medicine. This medicine also has side effects. 4 Aromatase inhibitors also lower the amount of estrogen made in the body in postmenopausal women. The side effects include osteoporosis and problems with memory, talking, and learning. 4 Your doctor can help you decide if taking one of these medicines is right for you. How can having your breasts removed prevent breast cancer?Having your breasts removed greatly lowers your chances of getting breast cancer, because it removes almost all of the breast tissue. But it is not yet known whether this surgery is better than having careful screening and then treatment if any breast cancer develops. 5 An operation to remove a breast is called a mastectomy (say "mass-TEK-tuh-mee"). When both breasts are removed, it is called a bilateral mastectomy. Bilateral means "both sides." Some women have their breasts reconstructed during the same operation. Breasts can also be reconstructed later. Having your breasts removed does not guarantee that you won't get breast cancer. This is because no operation can remove every bit of breast tissue. How can having your ovaries removed prevent breast cancer?Having your ovaries removed lowers your chances of getting breast cancer. The ovaries produce a woman's eggs as well as certain hormones , like estrogen. Estrogen seems to increase a woman's chances of getting breast cancer. That may be why having your ovaries removed lowers your chances. Experts recommend that women who have BRCA gene changes consider surgery to remove their ovaries and fallopian tubes when they are done having children, or between the ages of 35 and 40. 6 This decreases their risk of getting cancer in the breasts and the ovaries. The surgery to remove the ovaries is called an oophorectomy (say "oh-uh-fuh-REK-tuh-mee"). When your ovaries are removed, you can no longer get pregnant. Also, your body's supply of estrogen and other hormones will end, and you will go into early menopause . This may also put you at long-term risk for osteoporosis and heart disease. 7 The menopause symptoms after this surgery may include hot flashes, mood swings, weight gain, urinary problems, vaginal dryness, and pain with sexual intercourse. If you have serious symptoms, talk with your doctor about taking a short course of hormone therapy . This can help with symptoms but will not make them go away completely. 6 Why might your doctor recommend one option over another?You and your doctor can't begin to decide what steps you should take to prevent breast cancer until you know how high your personal risk is. If you don't know how high your risk is, talk to your doctor. He or she will help you find out. The higher your risk, the more you and your doctor may want to consider surgery. Sometimes women think that their risk is higher than it really is. These women may end up having drastic surgery that they don't need. That's why it's very important to know how high your personal risk for breast cancer is. Talk to your doctor. 2. Compare your options
Personal storiesAre you interested in what others decided to do? Many people have faced this decision. These personal stories may help you decide. Personal stories about preventing breast cancerThese stories are based on information gathered from health professionals and consumers. They may be helpful as you make important health decisions. "After I got over the shock of finding out that I have a BRCA gene change, I decided I would have surgery. But which one? What a tough choice—have my breasts removed or go into early menopause by having my ovaries removed. I finally chose to have my ovaries removed. I feel like that was the best step for me. My husband and I were done having children. Menopause hasn't been so bad. I was going to have to go through it sometime anyway. And I'd rather be in menopause than have cancer." — Selah, age 39 "I have a fairly strong family history of breast cancer, but I don't think surgery is for me. I am taking tamoxifen to prevent cancer." — Adrianna, age 34 "I have tested positive for a BRCA gene change, so my risk for cancer is very high. I'm determined to do everything I can to keep from getting breast and ovarian cancer. I recently had my ovaries removed, and I am scheduled to have my breasts removed later this year. Just having taken that first step has made me feel much better about my future." — Fran, age 40 "Even though I have tested positive for a BRCA gene change, I'm just not ready to take a drastic step like cutting off my breasts or removing my ovaries and going into menopause. I'm planning to have a family, so I'm choosing intensive surveillance, at least for now. Maybe I'll reconsider in a few more years, but for now, having frequent checkups and testing is enough." — June, age 25 3. What matters most to you?Your personal feelings are just as important as the medical facts. Think about what matters most to you in this decision, and show how you feel about the following statements. I’m very worried about getting breast cancer. Not important Somewhat important Very important
I’m more worried about ovarian cancer than breast cancer. Not important Somewhat important Very important
I’m worried about both breast and ovarian cancer. Not important Somewhat important Very important
I am not done having children. Not important Somewhat important Very important
I don’t want to go into menopause any earlier than I have to. Not important Somewhat important Very important
I have a strong desire to keep my breasts. Not important Somewhat important Very important
The thought of any kind of surgery scares me more than the thought of getting cancer. Not important Somewhat important Very important
I’m not ready to take medicine or have surgery. Not important Somewhat important Very important
My other important reasons: Not important Somewhat important Very important
4. Where are you leaning now?Now that you've thought about the facts and your feelings, you may have a general idea of where you stand on this decision. Show which way you are leaning right now. Having extra checkups and testing NOT having extra checkups and testing Leaning toward Undecided Leaning toward
Taking medicine NOT taking medicine Leaning toward Undecided Leaning toward
Having my breasts removed NOT having my breasts removed Leaning toward Undecided Leaning toward
Having my ovaries removed NOT having my ovaries removed Leaning toward Undecided Leaning toward
5. What else do you need to make your decision?Check the facts1. If someone in your family has breast cancer, does it mean that your chances of getting it are very high?
You're right. Sometimes women think that their risk is higher than it really is. That's why it's important to talk to your doctor before you consider having any treatment to prevent breast cancer.
2. When you find out that your chances of getting breast cancer are very high, do you need to make a quick decision about what to do?
That's correct. There's no reason to hurry. Some women will decide to choose extra checkups and testing now and think about surgery later, after they have had children and have finished breast-feeding.
3. If you have inherited a BRCA gene change, are your chances of getting breast cancer higher than if you just had a strong family history of breast cancer?
Yes, you're right. A woman who has inherited a BRCA gene change is very likely to get breast cancer.
Decide what's next1. Do you understand the options available to you? 2. Are you clear about which benefits and side effects matter most to you? 3. Do you have enough support and advice from others to make a choice? Certainty1. How sure do you feel right now about your decision? Not sure at all
Somewhat sure
Very sure
2. Check what you need to do before you make this decision.
3. Use the following space to list questions, concerns, and next steps. Credits
References
Citations
Note: The "printer friendly" document will not contain all the information available in the online document some Information (e.g. cross-references to other topics, definitions or medical illustrations) is only available in the online version. Last Revised: June 28, 2011 Author: Healthwise Staff Medical Review: Sarah Marshall, MD - Family Medicine & Douglas A. Stewart, MD - Medical Oncology |
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