Learning you have a BRCA variant: finding support and resources
Learning you have a BRCA variant can cause many different emotions. You likely have questions about what this result means for you and what you can do. You may also wonder what your result means for your family. There are important conversations you should have with healthcare professionals. In this article, we’ll help you begin to think about these conversations and explore what next steps you can take.
This article focuses on BRCA results for men. To view information relevant to women, click here.
What this result means
People who have one of the three BRCA variants that we test for are at increased risk for certain cancers, specifically male breast cancer and prostate cancer in men, and breast and ovarian cancer in women. These variants may also be associated with an increased risk for pancreatic cancer and melanoma. However, it’s important to remember that an increased risk does not mean you will definitely develop cancer. There are other factors that may impact your risk -- and there may be options for screening that you can discuss with a healthcare professional.
Studies indicate that 1-2% of men with a BRCA1 variant and 7-8% of men with a BRCA2 variant develop male breast cancer during their lifetime, compared to 0.12% of men in the general population.
Men with a BRCA1 variant may also have a higher risk for prostate cancer and pancreatic cancer. Men with a BRCA2 variant also have a higher risk for prostate cancer, and may have a higher risk for pancreatic cancer and melanoma.
For your family
Genetic variants like BRCA1 and BRCA2 are passed through families, so your result for this report may be relevant to your family members. If any biological female relatives -- like your mother, and any sisters or female children -- also have a BRCA variant, they would have an increased risk for breast, ovarian, and potentially certain other cancers. If any biological male relatives have this variant, they would have an increased risk for male breast cancer and potentially certain other cancers.
What should I do now?
We strongly recommend that people with a BRCA1 or BRCA2 variant speak to a healthcare professional about their result.
Talk to your doctor or a genetic counselor about confirming your result. It’s important to confirm a 23andMe BRCA result with additional testing in a clinical setting before taking any medical action. This is because the 23andMe test is performed at-home rather than in a doctor's office, and also because results you receive from 23andMe are not intended for diagnostic use. If you're not sure who to talk to, genetic counselors are a good option. Genetic counselors are trained to help people understand genetic testing options, and they can work with other healthcare professionals to coordinate your care. Ask your healthcare provider about access to genetic counseling services, or see below to learn how to search for a genetic counselor near you.
Discuss cancer screening options. Your doctor will likely talk with you about different options for cancer screening. Cancer screening can help detect certain cancers at an earlier stage, when they may be more treatable. It is recommended that men with a BRCA variant be screened for male breast cancer. Your doctor can also provide guidance about whether prostate cancer screening is appropriate, based on the genetic variant you carry.
Consider talking to your family about your result. Since BRCA variants are passed down from generation to generation, your family members may also carry the variant you do. Informing other family members about potential genetic health risks so that they can take action can be an important benefit of finding out about your own BRCA result.
Your result may be particularly important for female family members. For women carrying a BRCA variant, the risk of developing breast cancer is between 45% and 85%, compared to about 12% in the general population. In addition, women with a BRCA variant have up to a 46% chance of developing ovarian cancer, compared to about 1.3% in the general population.
We encourage you to review our help article, Shared Risk: Talking To Family Members About Genetic Test Results, which includes a few important questions to think about and some ideas that may help you find the right approach for sharing genetic risk information.
Things you and a healthcare professional might consider
Family history. If you have a family history of prostate, breast, ovarian, or other cancers, make sure you bring this up with your doctor in addition to your BRCA result. Your doctor will likely talk to you about the history of cancer in your family when helping you determine appropriate next steps.
Lifestyle factors. Although research is ongoing, maintaining a healthy body weight appears to be important for reducing cancer risk. And eating a healthy diet and staying physically active are always good ideas for keeping your body healthy overall.
There are many resources out there that can help people with BRCA variants. These resources can be especially valuable if you do not currently have a healthcare provider or a personal doctor.
Genetic counselors are healthcare professionals who specialize in hereditary conditions and are specifically trained to help people understand their genetics in the context of personal and family history. They can provide both medical knowledge and emotional support. Speaking with a genetic counselor about your result can ensure that you have a clear understanding of what your result means for you personally. A genetic counselor can also help you think about different screening options, and work with other healthcare professionals to coordinate your care.
Your healthcare provider may be able to provide you with a recommendation for a genetic counselor. You can also visit the National Society of Genetic Counselors (NSGC) or American Board of Genetic Counseling websites to find a genetic counselor convenient for you.
To search for a genetic counselor using the NGSC website:
- Choose whether you'd like to talk with a genetic counselor in person or by phone.
- Enter information about where you live to match with a genetic counselor who is nearby, or who is able to consult with people from your state via phone.
- (Optional) Choose whether you'd like a genetic counselor who specializes in a certain topic area. Because you'll be talking about cancer risk, we encourage you to select "cancer" from the list of options.
- Be sure to click the check-box that says "board-certified."
- After clicking "search," you'll be provided with a list of genetic counselors and a way to contact each of them.
Education and support from advocacy organizations
Learning that you have a BRCA variant can be difficult, but know that you’re not alone. There are several organizations that provide support resources for people with a genetic risk of cancer. Services offered by these organizations may include educational materials, online discussion forums, peer-to-peer support programs, helplines, and access to genetic counselors. This list of resources is for informational purposes to help you navigate your healthcare decision making and may be updated over time.
- Breastcancer.org: Breastcancer.org is a nonprofit organization dedicated to providing the most reliable, complete, and up-to-date information about breast cancer and a robust online peer support community. Their mission is to help individuals and their loved ones make sense of the complex medical and personal information about breast health and breast cancer, so they can make the best decisions for their lives.
- FORCE (Facing Our Risk of Cancer Empowered): FORCE is the voice of the hereditary cancer community, providing support, education and awareness to help those facing hereditary breast, ovarian, prostate and related cancers know their healthcare options and make informed decisions. Specially trained volunteers offer one-on-one support where you can be matched with other BRCA+ women and men, and learn how to manage hereditary cancer risk.
- Sharsheret: Sharsheret, Hebrew for chain, is a national organization supporting Jewish women and families, of all backgrounds, facing breast and ovarian cancer-those who are diagnosed and those at high risk. Anyone with questions or concerns about the BRCA gene can speak directly with Sharsheret’s genetic counselor, get connected with one-on-one peer support or access their website for a variety of genetics resources and more information about how hereditary breast cancer and ovarian cancer affects families.
- Susan G. Komen: Susan G. Komen is the world's largest breast cancer organization, having funded more breast cancer research than any other nonprofit outside of the federal government since their inception, while providing real-time help to those facing the disease. The Komen Breast Care Helpline offers free breast cancer information, psychosocial support and information about resources for both men and women with questions or concerns regarding breast cancer, including risk associated with genetic mutations.