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 women. To view information relevant to men, 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 breast and ovarian cancer in women, and breast and prostate cancer in men. 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 effective options for prevention that you can discuss with a healthcare professional.
In general, about 13% of women are expected to develop breast cancer over the course of their lifetimes. For women carrying a BRCA variant, this risk increases to 45-85% before the age of 70.
Variants in the BRCA1 and BRCA2 genes also increase risk for ovarian cancer. In general, 1-2% of women are expected to develop ovarian cancer during their lifetime, compared to 39-46% of women with a BRCA1 variant and 10-27% of women with a BRCA2 variant.
For your family
BRCA variants are passed down through families, so your result for this report is 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 also 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 screening and prevention options. Your doctor will likely talk with you about different options for screening and prevention. It is recommended that women with a BRCA variant be screened for breast cancer earlier and more often. In addition, surgery is often considered an effective way to prevent or significantly reduce risk for breast and ovarian cancer. Certain medications can also be used to reduce risk. You should discuss the risks and benefits associated with these options with your doctor. If you have a family history of pancreatic cancer, your doctor may also recommend pancreatic cancer screening.
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. 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.
Other things to consider
Family history. If you have a family history of breast, ovarian, pancreatic, or other cancers, make sure you bring this up with your doctor in addition to your BRCA result. Your doctor will likely talk with you about the history of cancer in your family when assessing your risk and helping you determine appropriate next steps.
Family planning. If you are in a stage in your life in which you are considering having children now or in the future, you may want to explore how different cancer prevention options might affect your plans. For example, some women may choose to have children earlier and plan to have a risk-reducing surgery afterwards. Other women may choose an alternate way of having children if they would prefer to have a risk-reducing surgery sooner. Still others may decide that earlier and more frequent cancer screening works best for them. Discussing the different options with your family and healthcare professionals like your doctor or a genetic counselor can help you decide what works best for you.
Lifestyle factors. Although research is ongoing on how much factors like diet and exercise affect risk for cancer in women with BRCA variants, eating a healthy diet and staying physically active are still 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 and prevention 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.
- Bright Pink: Bright Pink is a national nonprofit focused on the prevention and early detection of breast and ovarian cancer in young women. Their website, ExploreYourGenetics.org, demystifies the genetic testing process to enable more women to know their genetic predisposition and become informed and empowered advocates for their breast and ovarian health. Bright Pink’s Empowered Patient Guides provide women with a tool to start conversations with their health care team and, by texting 23andMe to 59227**, users can opt-in to receive Bright Pink’s Breast Health Reminders that encourage breast self-awareness and provide education on the signs and symptoms of breast cancer.
- 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 women 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.