Get the facts
Your options
- Have a breast cancer gene test.
- Don't have the test.
Key points to remember
- A breast cancer gene test, or BRCA (say "BRAH-kuh") gene test, can help women find out if they have inherited a gene change that can make them much more likely to get breast or ovarian cancer. The test is only recommended for women who have a strong family history of breast or ovarian cancer.
- Most women with a family history of breast or ovarian cancer—even a strong family history—do not have BRCA gene changes. But if you have a gene change, your risk for these cancers is even higher than if you had a family history without gene changes.1
- Not everyone who inherits a BRCA gene change will get cancer.
- Both men and women can inherit a BRCA gene change and pass it on to their children.
- A BRCA gene test can be one thing you consider when deciding what steps you need to take to lower your chances of getting cancer. Depending on how high your chances of getting cancer are, those steps may include having checkups more often, taking medicine, or having your breasts and/or ovaries removed.
- The test itself is simple. It involves taking a small sample of your blood and sending it to a special lab. But the results—whether positive or negative—could have a big effect on your life. So before you have the test, your doctor will have you talk to an expert called a genetic counselor. This expert can help you understand your chances of getting breast cancer and ovarian cancer, help you decide whether to be tested, and help you make good decisions after the test.
- Genetic testing can cost thousands of dollars. Your health insurance may not cover the cost.
How do you know if you have a strong family history of breast or ovarian cancer?
Your doctor will ask questions about you and your health and about your family's health to see how strong your family history is. If you are thinking about having a gene test, your doctor will send you to a genetic counselor. This expert will help you understand your chances of getting cancer and help you decide whether to be tested.
Jewish women are more likely to be BRCA gene carriers. Some experts recommend gene tests for women who are Ashkenazi Jews (Jews whose ancestors came from Eastern Europe) if they have one or both of the following:2
- Any first-degree relative with breast or ovarian cancer. First-degree relatives are parents, sisters and brothers, and children.
- Two second-degree relatives on the same side of the family with breast or ovarian cancer. Second-degree relatives are aunts and uncles, nieces and nephews, and grandparents.
If you are not Jewish, some experts recommend a gene test if you have one or more of the following:2
- Two first-degree relatives with breast cancer, one of whom was diagnosed before age 50
- Three or more first- or second-degree relatives with breast cancer, diagnosed at any age
- Both breast and ovarian cancer in the family
- A first-degree relative with cancer in both breasts
- Two or more relatives with ovarian cancer
- One relative with both breast and ovarian cancer
- A male relative with breast cancer
When you and your doctor or counselor have looked at the details of your family history, you will have an idea of how high your risk is. This will help you decide whether to have a BRCA gene test.
If you have a family member who has breast or ovarian cancer, think about asking that family member to have a gene test first. If your relative's test shows that she has a changed BRCA gene, that specific change is called a "known mutation." You and other family members can then be tested for that specific gene change.
What can you do if your test result is positive?
If you test positive for a BRCA gene change, you will face hard decisions about what you should do next. To lower your chances of getting cancer, you will want to discuss several things with your doctor. Together you can decide which of the following options may be best for you:
- Have checkups and tests more often. The American Cancer Society recommends an annual mammogram or an MRI for women at high risk. Talk with your doctor about how often you should have checkups.
- Have surgery to remove your breasts. Studies show that this surgery can lower your chance of getting breast cancer by 90%.3
- Have surgery to remove your ovaries. After this surgery you will not be able to get pregnant, but studies show that this surgery may lower your chances of getting breast cancer. It may also lower your chances of getting ovarian cancer by more than 95%.4, 5, 6
- Take medicine. Tamoxifen is a drug that is often given to women who have been treated for breast cancer to help keep the cancer from returning. Not enough studies have been done to show if this drug lowers the chances of breast cancer in women with BRCA changes. Another drug, raloxifene, has been approved for high-risk women who are beyond menopause. But research has not yet shown if raloxifene helps women with BRCA changes.
- Take birth control pills to lower the risk of ovarian cancer.
For more information, see:
Why might your doctor recommend a gene test?
If you have a strong family history of breast or ovarian cancer, your doctor may advise you to talk to a genetic counselor. This expert can help you understand your chances of getting cancer.
It will be up to you whether to have the test, but a genetic counselor can help you make a good decision.
Compare your options
What is usually involved?
- A technician draws a small amount of blood from your arm.
- Results may take several weeks.
- Gene tests are very expensive. Insurance may not cover the cost, or it may cover only part of the cost.
What are the benefits?
- If you test positive, you know you are more likely to get cancer and can choose which steps to take to prevent cancer.
- Other family members might benefit from knowing your test results.
What are the risks and side effects?
- The test result won't give you a clear action plan. You will still have to think about your options and decide what to do.
- If you test positive, you may feel depressed, afraid, or very worried.
- If you test negative, you may have a false sense of security. A negative BRCA test does not mean that you won't get breast or ovarian cancer.
- If you test positive, you will have to decide whether to tell other family members, who would then have to decide whether to be tested.
- Some people worry that having a positive test on their medical records could affect their ability to get a job or get insurance.7
What is usually involved?
- You and your doctor will use your family history to decide what you should do to prevent breast and ovarian cancer.
What are the benefits?
- You avoid having the false sense of security from a negative test result.
- You avoid having possible depression and fear from a positive test result.
What are the risks and side effects?
- You won't know for sure if your risk is higher because of a gene change.
- Not knowing whether you have a BRCA gene might give you a false sense of security. This could keep you from getting the regular checkups and testing that can find cancer early.
Personal stories
Are you interested in what others
decided to do? Many people have faced this decision. These
personal stories may help you decide.
If you need more information, see the topics:
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.
Reasons to have a breast cancer gene test
Reasons not to have a gene test
I want to let relatives know if I test positive so that they can think about having the test.
If I tested positive, I would not want to tell my relatives.
It's important for me to know whether or not I have inherited a BRCA gene defect.
I would rather take my chances than know for sure whether I carry the BRCA gene.
If I tested positive, I would want to have treatment, such as medicine or surgery, to prevent cancer.
I wouldn't take medicine or have surgery, even if I tested positive.
I am not worried about how the test results might affect my ability to get life insurance.
I am very worried about how the test results might affect my ability to get insurance.
My other important reasons:
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 the gene test
NOT having the test
What else do you need to make your decision?
Check the facts.
If I am at all worried about getting breast cancer, I should have a gene test.
- True No, that's not true. A gene test isn't for everyone. It's only recommended for women who have a strong family history of breast or ovarian cancer.
- False You're right. Most women don't need a breast cancer gene test. It is only recommended for women who have a strong family history of breast or ovarian cancer.
- I’m not sure It may help to go back and read "Key points to remember." A breast cancer gene test is only recommended for women who have a strong family history of breast or ovarian cancer.
Even if I have a strong family history of breast or ovarian cancer, there's a good chance that I don't have BRCA gene changes.
- True You're right. Most women with a family history of breast or ovarian cancer—even a strong family history—don't have BRCA gene changes.
- False No, this is actually true. Most women with a family history of breast or ovarian cancer—even a strong family history—don't have BRCA gene changes.
- I’m not sure It may help to go back and read "Key points to remember." Most women with a family history of breast or ovarian cancer—even a strong family history—don't have BRCA gene changes.
If I do have a BRCA gene change, my chances of getting breast or ovarian cancer are higher than normal.
- True Yes, you're right. Having a BRCA gene change increases your chances of getting breast or ovarian cancer.
- False No, that's not right. Having a BRCA gene change does increase your chances of getting breast or ovarian cancer.
- I’m not sure It may help to go back and read "Key points to remember." Having a BRCA gene change increases your chances of getting breast or ovarian cancer.
If I test positive for a BRCA gene change, I will face hard decisions about what I should do next.
- True That's right. If you test positive, you will have to decide what steps, if any, you want to take to prevent cancer.
- False No, that's wrong. If you test positive, you will have to decide what steps, if any, you want to take to prevent cancer.
- I’m not sure It may help to go back and read "What can you do if your test result is positive?" If you test positive, you will have to decide what steps, if any, you want to take to prevent cancer.
Decide what's next.
Do you understand the options available to you?
Are you clear about which benefits and side effects matter most to you?
Do you have enough support and advice from others to make a choice?
Certainty.
How sure do you feel right now about your decision?
Check what you need to do before you make this decision.
- Nothing. I'm ready to take action.
- I want to discuss the options with others.
- I want to learn more about my options.
Use the following space to list questions, concerns, and next steps.
Personal Stories
Personal stories about having a gene test for breast and ovarian cancer
These stories are based on information gathered from health professionals and consumers. They may be helpful as you make important health decisions.
My mother died of ovarian cancer, and I am Jewish. I want to know if I have inherited a BRCA gene defect, so I am going to have the test. If my test result is positive, I won't hesitate to have surgery to keep from getting either one of these cancers.
Fran, age 30
I have some family history of breast cancer, but I'm not going to have a gene test. I know that most people with a family history don't have a BRCA gene defect—they just have a family history. There's a difference. And I don't think I want to live the rest of my life knowing that I have a higher chance of getting cancer than most people. I also worry about having a positive test result on my medical record, where insurance companies and employers might see it.
Callie, age 32
My grandmother died of breast cancer, my mother had breast cancer, and I just finished treatment for my own breast cancer. I'm going to have a gene test, because I want my children to know whether a BRCA gene defect runs in the family. If I test positive, my children and my brother's family will have more information to protect their health.
Samantha, age 55
There's no way I could afford a gene test, because I don't have health insurance at my job. And although I have two aunts who have had breast cancer, the small chance that I might have inherited a gene defect doesn't really bother me.
Rae, age 25
References
Citations
Armstrong K, et al. (2000). Assessing the risk of breast cancer. New England Journal of Medicine, 342(8): 564–570.
U.S. Preventive Services Task Force (2005). Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility: Recommendation statement. Annals of Internal Medicine, 143(5): 355–361.
Morrow M, Gradishar W (2002). Breast cancer. BMJ, 324(7334): 410–414.
Wooster R, Weber BL (2003). Breast and ovarian cancer. New England Journal of Medicine, 348(23): 2339–2347.
Kauff ND, et al. (2002). Risk-reducing salpingo-oophorectomy in women with a BRCA1 or BRCA2 mutation. New England Journal of Medicine, 346(21): 1609–1615.
Rebbeck TR, et al. (2002). Prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. New England Journal of Medicine, 346(21): 1616–1622.
National Cancer Institute (2002). Genetic testing for BRCA1 and BRCA2: It's your choice. Available online: http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA.
