Where Can You Find Support if You Have the BRCA1, 2 Gene Mutation?

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If you have the BRCA1 or BRCA2 gene mutation, it means that you have an alteration in those genes so they do not function properly. Seventy-two percent of women with a BRCA1 mutation and 69 percent with a BRCA2 mutation were found to develop breast cancer by age 80, according to the National Cancer Institute and a 2017 study published in the medical journal JAMA.

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How BRCA1, BRCA2 mutations affect cancer

If you have a BRCA1 or BRCA2 gene mutation and you develop breast cancer, there are some other health risks to consider. Cancer survival is usually poorer when you have this genetic mutation, and you’re more likely to have triple-negative breast cancer, according to the National Cancer Institute. (Triple-negative cancer is harder to treat.) You may be more likely to develop breast cancer again in the future.

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Finding support for BRCA1 and BRCA2 gene mutations

Knowing that you are at a higher risk for breast cancer or other cancer types can be scary. The good news is that there are many ways to find support. One helpful idea is to know your risk level for breast cancer. The Centers for Disease Control and Prevention (CDC) has a guidebook called Know: BRCA Tool for Women. This resource allows you to review your family cancer history, receive a personal risk level, and share results with your doctor.

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Hereditary cancer support

BRCA1 and BRCA2 gene mutations are more common in certain population groups, such as Ashkenazi Jews. Several organizations are dedicated to sharing information and support for hereditary cancer risk. These groups include Oneinforty (named after the risk for BRCA1/BRCA2 gene mutations among the Ashkenazi Jewish population), Facing Our Risk of Cancer Empowered (FORCE), and Bright Pink.

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Find local support groups

A great way to discuss your breast cancer risk is with support groups, both in-person and online. The group FORCE has volunteers around the U.S. and Essex, United Kingdom, who can provide resources and information. If their online map doesn’t show volunteers in your area, you can call their office for help (866-288-7475, see more in the following slide “Pick up the phone for help”). You can also contact your local hospital to ask about face-to-face support groups.

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Online support groups offer help

If meeting in person for support is challenging for you, there are ways to find support online for your BRCA1/BRCA2 gene mutation and increased cancer risk. The organization Sharsheret, created to help Jewish people facing cancer, will connect people online with peer supporters. FORCE also has a message board where you can connect with others.

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Support for genetic testing and counseling

When you have a BRCA1 or BRCA2 mutation, you may decide to get genetic testing to find out your specific risk for breast cancer. Knowing that risk may help you make certain medical decisions. There are groups that provide detailed, helpful information about genetic testing. These include the Susan G. Komen Foundation and the CDC.

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Pick up the phone for help

Sometimes, hearing a reassuring voice on the phone is the most effective way to feel supported if you’re worried about your breast cancer risk. FORCE has a helpline, 1-866-288-RISK (7475), operated by peer volunteers. Volunteers will return calls within two days and provide support and resources. The same phone number can be used for Spanish speakers by dialing extension 720.

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Participating in a clinical trial

Participating in clinical trials will enable you to learn more about your gene mutation and contribute to future cancer diagnosis or treatment. The National Cancer Institute has a search to help you find trials related to BRCA1 or BRCA2 gene mutation. Clinical trials aren’t right for everyone — they usually require a time investment and transportation to appointments — so check with your doctor about which one(s) could be the right fit.

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Learning more about preventive mastectomy

Ever since actress Angelina Jolie had a double mastectomy because of her BRCA1 gene mutation, there’s been more media attention on the idea of preventive mastectomy for women who have a BRCA1 or BRCA2 mutation. This is a big decision to make, so it’s important to review reliable information about this choice. You can learn more about preventive mastectomies from the National Cancer Institute's fact sheet.

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There’s always help

As you learn more about your risk for breast cancer due to a BRCA1 or BRCA2 gene mutation, don’t get discouraged. Support and resources are available to help you make an informed decision about your medical care.