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Breast 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?
1Get the |
2Compare |
3Your |
4Your |
5Quiz |
6Your Summary |
Get the facts
Your options
If you are at high risk for breast cancer, your choices are:
- Get extra checkups and testing.
- Take medicines.
- Have surgery to remove both breasts.
- Have surgery to remove your ovaries.
Key points to remember
- If you have a personal or family history of breast cancer, you need to talk to your doctor to find out how high your risk really is.
- A woman who has inherited a BRCA gene change is very likely to get breast cancer.
- Taking medicines like anastrozole, raloxifene, and tamoxifen may help prevent breast cancer in women who are at high risk.
- Surgery to remove the breasts and/or ovaries greatly lowers the risk of breast cancer in high-risk women.
- Taking medicines and having surgery both have side effects and risks.
- None of the choices can prevent all breast cancer.
- Finding out that you are at high risk for breast cancer is not an emergency. There is plenty of time to carefully think about options.
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 genetic testing. 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.
- Out of 100 women who are at average risk, about 13 will get breast cancer sometime during their lives.footnote 2
- Out of 100 women who have inherited the BRCA1 gene, about 72 will get breast cancer by age 80.footnote 3
- Out of 100 women who have inherited the BRCA2 gene, about 69 will get breast cancer by age 80.footnote 3
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.
Genetic testing may be an option for some women to find out their risk.
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:
- Extra checkups and testing. Having checkups and testing more often may help find the cancer earlier, when it's easier to treat.
- Medicines. Taking certain anti-cancer drugs may help some women prevent breast cancer.
- Surgery to remove both breasts. This operation helps prevent most breast cancer.
- Surgery to remove the ovaries. This operation helps prevent both ovarian and breast cancer.
The choices will be different depending on how high your risk is. For example, a woman with a BRCA gene change may want to consider surgery 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 breastfeeding.
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 a schedule where you have both mammograms and MRI scans.
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.
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.
Aromatase inhibitors like anastrozole (say "uh-NASS-truh-zohl") also lower the amount of estrogen made in the body in postmenopausal women. The side effects include osteoporosis and joint pain.
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?
If your risk is very high, you might want to consider having surgery to remove your breasts. This can greatly lower your chance of getting breast cancer, because it removes almost all of the breast tissue.
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 have surgery to remove their ovaries and fallopian tubes when they are done having children, or between the ages of 35 and 40.footnote 4 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.footnote 5
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 were premenopausal before the surgery, starting hormone therapy after your surgery may help you avoid the symptoms and risks of early menopause without raising your risk for breast cancer.footnote 1 Talk with your doctor about your options. There are also other treatments that can help with symptoms.
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. Your doctor 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
What is usually involved? |
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|
---|---|---|
What are the benefits? |
|
|
What are the risks and side effects? |
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|
- You'll see your doctor 1 or 2 times a year and check your breasts often.
- You'll have a mammogram—and possibly an MRI—every year.
- Breast cancer might be found early enough to treat it successfully.
- This choice by itself won't prevent cancer.
- You could still have breast cancer that is not found early.
- Sometimes tests can be wrong, saying that you have a problem when you don't. That can lead to even more testing and a lot of worry.
- You'll take pills once or twice a day for at least 5 years.
- Medicine can lower the risk of breast cancer in some women.
- Medicine does not work as well as surgery to prevent cancer.
- Aromatase inhibitors may cause osteoporosis and joint pain.
- Taking tamoxifen may increase the risk of endometrial cancer. Both tamoxifen and raloxifene increase the risk for blood clots in veins and in the lungs.
- You can probably go home within 24 hours after a mastectomy.
- If you have breast reconstruction during the same surgery, you may stay in the hospital several days.
- This operation will greatly lower your chances of getting breast cancer.
- Surgery can cause other problems, such as infection, bleeding, or a reaction to the anesthesia.
- You will not be able to breastfeed in the future.
- The surgery may affect your feelings about your body.
- You will stay in the hospital for several days after surgery.
- If the operation is done laparoscopically (using very small cuts), you could go home the same day.
- This operation will greatly lower your chances of getting breast and ovarian cancer.
- Surgery can cause other problems, such as infection, bleeding, or a reaction to the anesthesia.
- You will not be able to get pregnant.
- You will start early menopause. This can cause symptoms, such as hot flashes, and may increase your long-term risks for osteoporosis and heart disease.
Personal stories about preventing breast cancer
These 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
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.
I'm more worried about ovarian cancer than breast cancer.
I'm worried about both breast and ovarian cancer.
I am not done having children.
I don't want to go into menopause any earlier than I have to.
I have a strong desire to keep my breasts.
The thought of any kind of surgery scares me more than the thought of getting cancer.
I'm not ready to take medicine or have surgery.
My other important reasons:
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
Taking medicine
NOT taking medicine
Having my breasts removed
NOT having my breasts removed
Having my ovaries removed
NOT having my ovaries removed
What else do you need to make your decision?
Check the facts
Decide what's next
Certainty
1. How sure do you feel right now about your decision?
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 decision
Next steps
Which way you're leaning
How sure you are
Your comments
Your knowledge of the facts
Key concepts that you understood
Key concepts that may need review
Getting ready to act
Patient choices
Credits and References
Author | Ignite Healthwise, LLC Staff |
---|---|
Clinical Review Board | Clinical Review Board All Healthwise education is reviewed by a team that includes physicians, nurses, advanced practitioners, registered dieticians, and other healthcare professionals. |
- Domchek S, Kaunitz AM (2016). Use of systematic hormone therapy in BRCA mutation carriers. Menopause, 23(9): 1026–1027. DOI: 10.1097/GME.0000000000000724. Accessed February 6, 2017.
- Howlader N, et al. (2020). SEER Cancer Statistics Review, 1975–2017. National Cancer Institute. https://seer.cancer.gov/csr/1975_2017. Accessed July 31, 2020.
- Kuchenbaecker KB, et al. (2017). Risks of breast, ovarian, and contralateral breast cancer for BRCA1 and BRCA2 mutation carriers. JAMA, 317(23): 2402–2416. DOI: 10.1001/jama.2017.7112. Accessed August 5, 2020.
- National Cancer Institute (2012). Genetics of Breast and Ovarian Cancer (PDQ)—Health Professional Version. Available online: http://www.cancer.gov/cancertopics/pdq/genetics/breast-and-ovarian/healthprofessional.
- National Cancer Institute (2016). Genetics of breast and gynecologic cancers (PDQ)—Health professional version. National Cancer Institute. http://www.cancer.gov/types/breast/hp/breast-ovarian-genetics-pdq#link/_2186_toc. Accessed August 8, 2016.
Breast Cancer: What Should I Do if I'm at High Risk?
- Get the facts
- Compare your options
- What matters most to you?
- Where are you leaning now?
- What else do you need to make your decision?
1. Get the Facts
Your options
If you are at high risk for breast cancer, your choices are:
- Get extra checkups and testing.
- Take medicines.
- Have surgery to remove both breasts.
- Have surgery to remove your ovaries.
Key points to remember
- If you have a personal or family history of breast cancer, you need to talk to your doctor to find out how high your risk really is.
- A woman who has inherited a BRCA gene change is very likely to get breast cancer.
- Taking medicines like anastrozole, raloxifene, and tamoxifen may help prevent breast cancer in women who are at high risk.
- Surgery to remove the breasts and/or ovaries greatly lowers the risk of breast cancer in high-risk women.
- Taking medicines and having surgery both have side effects and risks.
- None of the choices can prevent all breast cancer.
- Finding out that you are at high risk for breast cancer is not an emergency. There is plenty of time to carefully think about options.
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 genetic testing. 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.
- Out of 100 women who are at average risk, about 13 will get breast cancer sometime during their lives.2
- Out of 100 women who have inherited the BRCA1 gene, about 72 will get breast cancer by age 80.3
- Out of 100 women who have inherited the BRCA2 gene, about 69 will get breast cancer by age 80.3
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.
Genetic testing may be an option for some women to find out their risk.
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:
- Extra checkups and testing. Having checkups and testing more often may help find the cancer earlier, when it's easier to treat.
- Medicines. Taking certain anti-cancer drugs may help some women prevent breast cancer.
- Surgery to remove both breasts. This operation helps prevent most breast cancer.
- Surgery to remove the ovaries. This operation helps prevent both ovarian and breast cancer.
The choices will be different depending on how high your risk is. For example, a woman with a BRCA gene change may want to consider surgery 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 breastfeeding.
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 a schedule where you have both mammograms and MRI scans.
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.
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.
Aromatase inhibitors like anastrozole (say "uh-NASS-truh-zohl") also lower the amount of estrogen made in the body in postmenopausal women. The side effects include osteoporosis and joint pain.
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?
If your risk is very high, you might want to consider having surgery to remove your breasts. This can greatly lower your chance of getting breast cancer, because it removes almost all of the breast tissue.
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 have surgery to remove their ovaries and fallopian tubes when they are done having children, or between the ages of 35 and 40.4 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.5
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 were premenopausal before the surgery, starting hormone therapy after your surgery may help you avoid the symptoms and risks of early menopause without raising your risk for breast cancer.1 Talk with your doctor about your options. There are also other treatments that can help with symptoms.
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. Your doctor 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
Get extra checkups and testing only | Take medicine (such as tamoxifen or raloxifene) | |
---|---|---|
What is usually involved? |
|
|
What are the benefits? |
|
|
What are the risks and side effects? |
|
|
Have your breasts removed | Have your ovaries removed | |
What is usually involved? |
|
|
What are the benefits? |
|
|
What are the risks and side effects? |
|
|
Personal stories
Personal stories about preventing breast cancer
These 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
"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.
I'm more worried about ovarian cancer than breast cancer.
I'm worried about both breast and ovarian cancer.
I am not done having children.
I don't want to go into menopause any earlier than I have to.
I have a strong desire to keep my breasts.
The thought of any kind of surgery scares me more than the thought of getting cancer.
I'm not ready to take medicine or have surgery.
My other important reasons:
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
Taking medicine
NOT taking medicine
Having my breasts removed
NOT having my breasts removed
Having my ovaries removed
NOT having my ovaries removed
5. 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?
- Yes
- No
- I'm not sure
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?
- Yes
- No
- I'm not sure
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
- No
- I'm not sure
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?
2. Check what you need to do before you make this decision.
- I'm ready to take action.
- I want to discuss the options with others.
- I want to learn more about my options.
By | Ignite Healthwise, LLC Staff |
---|---|
Clinical Review Board | Clinical Review Board All Healthwise education is reviewed by a team that includes physicians, nurses, advanced practitioners, registered dieticians, and other healthcare professionals. |
- Domchek S, Kaunitz AM (2016). Use of systematic hormone therapy in BRCA mutation carriers. Menopause, 23(9): 1026–1027. DOI: 10.1097/GME.0000000000000724. Accessed February 6, 2017.
- Howlader N, et al. (2020). SEER Cancer Statistics Review, 1975–2017. National Cancer Institute. https://seer.cancer.gov/csr/1975_2017. Accessed July 31, 2020.
- Kuchenbaecker KB, et al. (2017). Risks of breast, ovarian, and contralateral breast cancer for BRCA1 and BRCA2 mutation carriers. JAMA, 317(23): 2402–2416. DOI: 10.1001/jama.2017.7112. Accessed August 5, 2020.
- National Cancer Institute (2012). Genetics of Breast and Ovarian Cancer (PDQ)—Health Professional Version. Available online: http://www.cancer.gov/cancertopics/pdq/genetics/breast-and-ovarian/healthprofessional.
- National Cancer Institute (2016). Genetics of breast and gynecologic cancers (PDQ)—Health professional version. National Cancer Institute. http://www.cancer.gov/types/breast/hp/breast-ovarian-genetics-pdq#link/_2186_toc. Accessed August 8, 2016.
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Current as of: October 25, 2024
Author: Ignite Healthwise, LLC Staff
Clinical Review Board
All Healthwise education is reviewed by a team that includes physicians, nurses, advanced practitioners, registered dieticians, and other healthcare professionals.
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