Talking to Your Family About Your BRCA1 or BRCA2 Mutation

Why Talk to My Family?

Your family members can benefit from knowing about your BRCA1 or BRCA2 mutation.  Talk to your family members about your mutation, so they will know that

• BRCA1 and BRCA2 mutations are passed through families.
• A person with a BRCA1 or BRCA2 mutation is more likely to get breast, ovarian, and other cancers.
• Genetic counseling and testing for BRCA1 and BRCA2 mutations can provide information about their risk.
• If they choose to be tested, they should be tested for the same mutation that you have.
• Steps can be taken to prevent breast and ovarian cancer or find it earlier.

How Do I Talk to My Family About My BRCA1 or BRCA2 Mutation?

• WHO: Your parents, siblings, and children are the family members who are most likely to have the same BRCA1 or BRCA2 mutation that you do. Other blood relatives, such as aunts, uncles, nieces, nephews, and cousins, are also more likely to have the mutation. Your healthcare provider or genetic counselor can help you figure out who in your family might have the mutation and thus would benefit from knowing about your mutation.
• WHAT: You can share test results, letters from your doctor or genetic counselor, or other information you received about your mutation with your family. Giving family members information about your specific genetic mutation helps their healthcare providers know exactly which test to use and might possibly save your family money.
• HOW: If you need extra support talking to your family, bring a friend. You can also ask a family member to attend your next medical appointment with you. The website Kintalk can help you let your relatives know about your mutation, and it provides resources to help your relatives learn more about BRCA1 and BRCA2 mutations. You can fill out this sample letter and send it to your family.

How Do I Talk to My Children?

If you have a BRCA1 or BRCA2 mutation, each of your children has a 50% (1 in 2) chance of also having it. Genetic testing for BRCA1 or BRCA2 mutations is typically not recommended for children younger than 18, but can be considered when your children reach adulthood. Younger children might not be able to understand what your mutation means for you or for them.

Children differ in the age at which they are ready to learn about this information. Answer the questions they ask. They will ask more complex questions as they grow and are ready to learn more.

Know that your children may have fears about the risk both to themselves and to you. Just as you need time and support to cope with the information and accept it, so will your children.

What if My Family Does Not Want to Talk?

Talking to some family members about your BRCA1 or BRCA2 mutation might not be easy. Some might not understand why they need to know this information. Others might be nervous that they could also have the mutation. Remember that family members need to make their own choices about getting tested, whether or not you agree with their decisions. If family members don’t want to talk about your BRCA1 or BRCA2 mutation, respect their wishes. Let them know you are available to talk if they have questions, and give them places to find information.

When family members don’t want to talk about your BRCA1 or BRCA2 mutation, you might feel upset or alone. Seek support from friends, healthcare providers, other family members, or people you know with BRCA1 or BRCA2 mutations.

Where Can I Find More Information?

You can find information on BRCA1 and BRCA2 mutations at

• Know:BRCA
• Bring Your Brave Campaign

You can find information on support groups for breast cancer at

• Disease InfoSearch: Breast Cancer

and support groups for ovarian cancer at

• Disease InfoSearch: Ovarian Cancer