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Breast Cancer Risk: Should I Have a BRCA Gene Test?
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 Risk: Should I Have a BRCA Gene Test?
1Get the | 2Compare | 3Your | 4Your | 5Quiz | 6Your Summary |
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 people find out if they have inherited a gene change. This change can make them much more likely to get breast cancer-and for women, ovarian cancer also.
- This test is only recommended for those who have a strong family history of breast cancer or family history of ovarian cancer. But most people with a family history of breast or ovarian cancer-even a strong family history-do not have BRCA gene changes.
- 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.
- Having a BRCA gene test may help you plan steps to lower your risk.
- 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.
- Most insurance companies will cover the cost of genetic testing for those who meet the conditions for testing.
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.
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.
You may be more likely to have a BRCA gene change if you:footnote 1
- Were diagnosed with breast cancer before age 50.
- Have had breast cancer in both breasts.
- Have had breast cancer and ovarian cancer.
- Have one or more male family members who have had breast cancer.
- Have multiple cases of breast cancer in the family.
- Have at least one family member who has had BRCA-related cancer.
- Are an Ashkenazi Jew (a Jewish person whose ancestors came from Eastern Europe).
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.
But if your family member's test comes back negative, it is not likely that you carry the gene change.
What can you do if your test result is positive?
If you test positive for a BRCA gene change, you may face hard decisions about what you should do next. You may have several options that can lower your chances of getting cancer:
- Have checkups and tests more often. An annual mammogram or an MRI may be recommended. Talk with your doctor about how often you should have checkups.
- Have surgery to remove your breasts. This can greatly reduce your chance of getting breast cancer.
- Have surgery to remove your ovaries. After this surgery you will not be able to get pregnant. And if you were having menstrual cycles, you will start menopause. But this surgery can lower your chances for getting breast cancer and greatly reduce your chance of getting ovarian cancer.
- Take medicine. Medicines that may help prevent breast cancer in women who are at high risk include raloxifene and tamoxifen.
- Take birth control pills to lower the risk of ovarian cancer. But birth control pills may have other health risks, so talk with your doctor.
Talk with your doctor about which of these options may be best for you.
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
Compare
What is usually involved? |
| |
|---|---|---|
What are the benefits? |
| |
What are the risks and side effects? |
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- A technician draws a small amount of blood from your arm.
- Results may take several weeks.
- Most insurance companies will cover the cost of genetic testing for those who meet the conditions for testing.
- 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.
- 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.
- If you test positive, you may have difficulty getting life insurance, long-term care insurance, or disability insurance.
- You and your doctor will use your family history to decide what you should do to prevent breast and ovarian cancer.
- You avoid having the false sense of security from a negative test result.
- You won't know for sure if your risk is higher because of a gene change.
- Not knowing whether you have a BRCA gene change might keep you from knowing how high your risk actually may be. And that could keep you from taking action that could reduce your risk.
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 of Ashkenazi Jewish descent. 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 heard that having a positive test result on my medical record might affect my rates for life insurance.
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
My mother died of breast cancer at 47, so I wanted the test. If it was positive, I was ready to have my breasts and ovaries removed. When I found out my test was negative, my first thought was, "I'm going to live!" But after the counselor explained that my risk for getting breast cancer was still almost 30% due to my family history, I cried all the way home. Having the test didn't erase my worries about getting cancer. All I learned is that I don't have the gene change, and so my daughter won't either. But my sister might, so she will need testing. And I might still get breast cancer, so now I get preventive tests every 6 months. This means cancer is always on my mind. So really, I don't sleep any better at night than I did before.
Jane, age 40
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 defect.
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 life 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
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 | Healthwise Staff |
|---|---|
| Primary Medical Reviewer | Sarah Marshall, MD - Family Medicine |
| Primary Medical Reviewer | Kathleen Romito, MD - Family Medicine |
| Primary Medical Reviewer | E. Gregory Thompson, MD - Internal Medicine |
| Specialist Medical Reviewer | Wendy Y. Chen, MD, MPH, MD, MPH - Medical Oncology, Hematology |
- U.S. Preventive Services Task Force (2013). Risk assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: U.S. Preventive Task Force recommendation statement. U.S. Preventive Services Task Force. http://www.uspreventiveservicestaskforce.org/uspstf12/brcatest/brcatestfinalrs.htm. Accessed March 6, 2014.
Breast Cancer Risk: Should I Have a BRCA Gene Test?
- 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
- 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 people find out if they have inherited a gene change. This change can make them much more likely to get breast cancer-and for women, ovarian cancer also.
- This test is only recommended for those who have a strong family history of breast cancer or family history of ovarian cancer . But most people with a family history of breast or ovarian cancer-even a strong family history-do not have BRCA gene changes.
- 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.
- Having a BRCA gene test may help you plan steps to lower your risk.
- 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.
- Most insurance companies will cover the cost of genetic testing for those who meet the conditions for testing.
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.
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.
You may be more likely to have a BRCA gene change if you:1
- Were diagnosed with breast cancer before age 50.
- Have had breast cancer in both breasts.
- Have had breast cancer and ovarian cancer.
- Have one or more male family members who have had breast cancer.
- Have multiple cases of breast cancer in the family.
- Have at least one family member who has had BRCA-related cancer.
- Are an Ashkenazi Jew (a Jewish person whose ancestors came from Eastern Europe).
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.
But if your family member's test comes back negative, it is not likely that you carry the gene change.
What can you do if your test result is positive?
If you test positive for a BRCA gene change, you may face hard decisions about what you should do next. You may have several options that can lower your chances of getting cancer:
- Have checkups and tests more often. An annual mammogram or an MRI may be recommended. Talk with your doctor about how often you should have checkups.
- Have surgery to remove your breasts. This can greatly reduce your chance of getting breast cancer.
- Have surgery to remove your ovaries. After this surgery you will not be able to get pregnant. And if you were having menstrual cycles, you will start menopause. But this surgery can lower your chances for getting breast cancer and greatly reduce your chance of getting ovarian cancer.
- Take medicine. Medicines that may help prevent breast cancer in women who are at high risk include raloxifene and tamoxifen.
- Take birth control pills to lower the risk of ovarian cancer. But birth control pills may have other health risks, so talk with your doctor.
Talk with your doctor about which of these options may be best for you.
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.
2. Compare your options
| Have a BRCA gene test | Don't have a BRCA gene test | |
|---|---|---|
| What is usually involved? |
|
|
| What are the benefits? |
|
|
| What are the risks and side effects? |
|
|
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 of Ashkenazi Jewish descent. 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 heard that having a positive test result on my medical record might affect my rates for life insurance."
— 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
"My mother died of breast cancer at 47, so I wanted the test. If it was positive, I was ready to have my breasts and ovaries removed. When I found out my test was negative, my first thought was, "I'm going to live!" But after the counselor explained that my risk for getting breast cancer was still almost 30% due to my family history, I cried all the way home. Having the test didn't erase my worries about getting cancer. All I learned is that I don't have the gene change, and so my daughter won't either. But my sister might, so she will need testing. And I might still get breast cancer, so now I get preventive tests every 6 months. This means cancer is always on my mind. So really, I don't sleep any better at night than I did before."
— Jane, age 40
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.
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 defect.
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 life insurance.
My other important reasons:
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 the gene test
NOT having the test
5. What else do you need to make your decision?
Check the facts
1. If I am at all worried about getting breast cancer, I should have a gene test even if I don't have a strong family history of breast cancer or ovarian cancer.
- True
- False
- I'm not sure
2. 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
- False
- I'm not sure
3. If I do have a BRCA gene change, my chances of getting breast or ovarian cancer are higher than normal.
- True
- False
- I'm not sure
4. If I test positive for a BRCA gene change, I will face hard decisions about what I should do next.
- True
- False
- 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 | Healthwise Staff |
|---|---|
| Primary Medical Reviewer | Sarah Marshall, MD - Family Medicine |
| Primary Medical Reviewer | Kathleen Romito, MD - Family Medicine |
| Primary Medical Reviewer | E. Gregory Thompson, MD - Internal Medicine |
| Specialist Medical Reviewer | Wendy Y. Chen, MD, MPH, MD, MPH - Medical Oncology, Hematology |
- U.S. Preventive Services Task Force (2013). Risk assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: U.S. Preventive Task Force recommendation statement. U.S. Preventive Services Task Force. http://www.uspreventiveservicestaskforce.org/uspstf12/brcatest/brcatestfinalrs.htm. Accessed March 6, 2014.
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Current as of: February 16, 2018
