It can be quite a shock to find out that you’ve tested positive for the BRCA1 or 2 gene mutations. This means, that, although you don’t have it right now, you have an increased risk for developing breast, ovarian, and other cancers. Dealing with that news is difficult enough; but then comes another tough task: deciding how to tell your family members, who might be at a higher risk, too.
Come to Grips With Your Situation
There is no rush to share the news, so take some time to come to terms with what these test results mean for you and how you are going to proceed to protect your own health. Then take a deep breath and share with family members who may have a personal stake.
Since you share genetic data with your family members, it’s possible that they, too, may have the gene mutation, which could not only affect them, but also their children. “There are people who believe the more information you have the better,” says Kathy Schneider, senior genetic counselor at Dana-Farber Cancer Institute’s Center for Cancer Genetics and Prevention. Once armed with their own information, they can explore next steps.
How to Let Your Family Members Know
In some families, people are estranged from one another, or perhaps not everyone is in close contact. In this case, you might write a letter letting them know your results and then it’s up to them how to proceed, Schneider suggests.
What Do You Tell Them?
Make it simple, Schneider says. You do not have to go into all the details. Say: “I had the genetic test. I have the gene. It may not mean anything for you right now, but I wanted you to know.”
Not Everyone Will Appreciate It
Some of your relatives may not want to know about their potential risk and will not welcome your news, she admits. “We all know how messy families can be,” says Schneider. “You are talking about something very sensitive and powerful. People can have different reactions to the news.”
You May Save a Life
However, by informing them, you may be saving a life, says Schneider. After all, with knowledge comes power and the choice to take action to protect your health, either through prophylactic surgery or increased surveillance and testing.
Guide Them to Support
Help your family members by finding them a support group that can be useful in their decision-making process. Facing Our Risk of Cancer Empowered (FORCE) provides support to those at high risk for breast and ovarian cancer. They have groups in almost every state, on-line discussion boards, and information about how to talk to your family.
Help the Women in Your Life
Bright Pink is another organization that provides support and resources primarily for high-risk young women committed to being proactive with breast and ovarian health.
Help Them Find a Genetic Counselor
If your family members are interested in being tested or finding out more information about their own risks, help them find a genetic counselor.
How to Tell Your Children
You may also want to share the news with your children. The key to talking to children is taking into account their ages. “The information must be delivered in an age-appropriate manner,” says Gail Fisher, deputy director of the BRCA Foundation. “Let their questions guide how deeply you get into the details.” Most children are not tested for the BRCA gene mutation until they are in their 20s.
Be There for Each Other
Remember, the decision to undergo genetic testing is very personal and up to each individual. By letting your family know your situation and explaining the risks, you are giving them important information. Be there to help them along the way and if necessary, face important health decisions together.