What should I do if I'm at high risk for breast cancer?
Introduction
This information will help you understand your choices, whether you share in the decision-making process or rely on your doctor's recommendation.
In this decision aid, you'll find answers to these questions:
- How do you know if you are at high risk for breast cancer?
- What are your choices if you're at high risk?
- What does it mean to have extra checkups and testing?
- How can medicines prevent breast cancer?
- How can having your breasts removed prevent breast cancer?
- How can having your ovaries removed prevent breast cancer?
Medical Information
How do you know if you are at high risk for breast cancer?
The average woman has a 1-in-9 chance of getting breast cancer in her lifetime.1 That means that for every 9 women, 1 will get breast cancer sometime during her life and 8 will not.
But those numbers don't apply to women who have a strong family history of breast cancer. For these women, the chances of getting breast cancer are much higher.
If your risk of getting breast cancer is high, there are some steps you can take that may lower that risk. Some of them are very serious steps, such as having your breasts removed. The choices you have and make will depend on how high your risk is, as well as your health, your age, and your personal feelings. It's important to remember that none of these choices can prevent all breast cancer.
You 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 whether you are at high risk, talk to your doctor. He or she will help you find out.
If you have breast cancer in your family, your doctor can help you figure out how much that affects your chances of getting it. Some women have a high risk because they have what is called a family history. That means they have a number of relatives with breast cancer.
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.
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 these numbers may not show what will happen in your case.
- Out of 100 average women, about 12 will get breast cancer.
- Out of 100 women with a family history of breast cancer, between 24 and 60 will get breast cancer, depending on how strong the family history is.2 To put it another way, having a family history makes you 2 to 5 times more likely to get breast cancer than the average woman.
- Out of 100 women who have inherited a breast cancer gene, between 36 and 84 will get breast cancer.3 To put it another way, having a BRCA gene change makes you 3 to 7 times more likely to get breast cancer than the average woman.
Sometimes women think 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.
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 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.
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. 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.
For high-risk women, this means:
- Going to the doctor for checkups 1 or 2 times a year.
- Having a mammogram every year, even if you are younger than 40.
- Letting your doctor know if you notice anything unusual in your breast.
Benefits and risks of extra checkups and testing Benefits
Risks
- You may be able to find breast cancer early, when it is more likely to be cured.
- Testing sometimes does not find breast cancer early. Cancer that is not found early is more likely to spread to other parts of the body. Breast cancer that has spread is much harder to cure.
- 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. The more often you have testing, the more likely this is to happen.
How can medicines prevent breast cancer?
Tamoxifen (say "tuh-MOK-suh-fin") is a medicine that blocks the effect of estrogen on breast cancer cells and normal breast cells. Studies show that taking tamoxifen for 5 years greatly lowers the chance of breast cancer in women who are at high risk because of family history, age, and other factors. But there is not enough information yet to show if this drug helps prevent cancer in women who carry a BRCA gene change.4
Another medicine, raloxifene, has also been shown to reduce the risk of breast cancer.5 Tamoxifen or raloxifene should not be used by women who have or had blood clots in the legs, lungs, or eyes.
Benefits and risks of taking medicine to prevent breast cancer Benefits
Risks
- Taking tamoxifen or raloxifene lowers the risk of breast cancer in high-risk women.
- Taking tamoxifen or raloxifene may increase the risk of some other serious diseases, including stroke, and blood clots in veins and in the lungs. Tamoxifen may also increase the risk of endometrial cancer.
- Tamoxifen may not work as well in women who have a changed BRCA gene.
- Taking tamoxifen doesn't work as well as removing the breasts.
- Tamoxifen and raloxifene have side effects, including the increased risks of blood clotting.
How can having your breasts removed prevent breast cancer?
Having your breasts removed lowers your chances of getting breast cancer a lot, because it removes almost all of the breast tissue.6
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.7
Benefits and risks of having surgery to remove your breasts Benefits
Risks
- This surgery greatly lowers your chances of getting breast cancer.
- Losing your breasts could make you feel bad about your body. But many women do have their breasts reconstructed.
- You will not be able to breast-feed.
- Surgery can cause other problems, such as infection, bleeding, or a reaction to the anesthesia.
How can having your ovaries removed prevent breast cancer?
Having your ovaries removed lowers your chances of getting breast cancer.8, 9 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.
This operation may be recommended for women who carry changed BRCA genes. Women who carry these genes have a much higher chance 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 have children. Also, your body's supply of those hormones will end and you will go into early menopause.
Menopause symptoms include hot flashes and vaginal dryness. Although many women in menopause take hormone therapy to control these symptoms, hormone therapy is not recommended if you are having your ovaries removed to help prevent cancer.
Benefits and risks of having surgery to remove your ovaries Benefits
Risks
- This surgery lowers your chances of getting breast cancer a lot.
- If you have a BRCA gene change, it also lowers your chances of getting ovarian cancer.
- You will no longer be able to have children.
- You will start menopause early.
- You could still get breast cancer.
- Your risk of getting osteoporosis will be higher. This disease makes your bones thin, brittle, and more likely to break.
If you need more information, see the topic Breast Cancer.
Your Information
If you are at high risk for breast cancer, your choices are:
- Extra checkups and testing.
- Medicines.
- Surgery to remove both breasts (mastectomy).
- Surgery to remove the ovaries (oophorectomy).
Your decision will depend in part on how high your risk is and whether it is caused by family history alone or by a BRCA gene change. For example, a woman with a BRCA gene change may want to think about having both of her breasts and her ovaries removed. But surgery may not be a good choice for a woman who has a family history with no gene change. Talk to your doctor about your risk and which choices you should consider.
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 them.
Talk to your doctor about your risk for cancer and your choices for preventing it. The decision about what to do takes into account your personal feelings and the medical facts.
None of the choices below can prevent all breast cancer.
Deciding what to do if you're at high risk for breast cancer Reasons for
Reasons against
Extra checkups and testing only
- Breast cancer might be found early enough to treat it successfully.
- You do not want to take medicine or have surgery.
Are there other reasons you might choose extra checkups and testing?
- This choice by itself does not prevent cancer.
- You could still have breast cancer that is not found early.
Are there other reasons you might not choose extra checkups?
Medicine
- Medicine can lower the risk of breast cancer in some women.
- You would rather take medicine than have surgery.
Are there other reasons you might choose medicine?
- You have a changed BRCA gene. Medicine has not been shown to work very well in women who have changed genes.
- Medicine does not work as well as surgery to prevent cancer.
Are there other reasons you might not choose this method of prevention?
Having your breasts removed
- This operation will greatly lower your chances of getting breast cancer.
- Having this operation will lower your chances of breast cancer more than taking medicine will.
Are there other reasons you might choose to have your breasts removed?
- You are worried about possible side effects of this operation, such as infection.
- You do not want to lose your breasts. Many women have their breasts reconstructed.
- You would rather take medicine than have surgery.
- You are worried about ovarian cancer too.
- You are planning to breast-feed in the future.
Are there other reasons you might not choose this method of prevention?
Having your ovaries removed
- This operation will greatly lower your chances of getting breast and ovarian cancer.
- No one will be able to see that you have no ovaries.
Are there other reasons you might choose to have your ovaries removed?
- You are not done having children.
- You do not want to go into early menopause.
- You would rather take medicine than have surgery.
- You are worried about the risks of surgery.
- You could get cancer anyway.
Are there other reasons you might not choose this method of prevention?
These personal stories may help you make your decision.
Wise Health Decision
Use this worksheet to help you make your decision. After completing it, you should have a better idea of how you feel about your options. Discuss the worksheet with your doctor.
Circle the answer that best applies to you.
I am very worried about getting breast cancer. Yes No NA* I am more worried about ovarian cancer than breast cancer. Yes No NA I am worried about both breast and ovarian cancer. Yes No NA I am not done having children. Yes No Unsure I have a strong family history of breast or ovarian cancer. Yes No Unsure I have tested positive for a BRCA gene change. Yes No NA I don't want to go into menopause any earlier than I have to. Yes No NA I worry about how I will look if my breasts are removed. Yes No NA I feel that my chances of avoiding cancer will be a lot better if I have surgery. Yes No Unsure The thought of any kind of surgery scares me more than the thought of getting cancer. Yes No Unsure I am not ready to take medicine or have surgery. Yes No Unsure *NA=Not applicable
Use the following space to list any other important concerns you have about this decision.
What is your overall impression?
Your answers in the above worksheet are meant to give you a general idea of where you stand on this decision. You may have one overriding reason to use or not use any of these treatments for preventing breast cancer.
Check the boxes below that represent your overall impressions about your decision.
Leaning toward having extra checkups and testing
Leaning toward NOT having extra checkups and testing
Leaning toward taking medicine
Leaning toward NOT taking medicine
Leaning toward having your breasts removed
Leaning toward NOT having your breasts removed
Leaning toward having your ovaries removed
Leaning toward NOT having your ovaries removed
Return to the topic Breast Cancer.
| Author: | Kathe Gallagher, MSW Ralph Poore | Last Updated: October 22, 2007 |
| Medical Review: | Joy Melnikow, MD, MPH - Family Medicine Anne C. Poinier, MD - Internal Medicine Douglas A. Stewart, MD - Medical Oncology | |
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