How to Emotionally Handle Having the BRCA1 or BRCA2 Gene Mutation

Health Writer
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For many people, among the worst words they can hear are, “You’ve got cancer.” But then there are those who get the distressing news, “You are BRCA positive.” That means you do not yet have breast or ovarian cancer, but you have a predisposition for it.


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Your potential risk of cancer

In fact, women with the BRCA1 gene mutation have a 72 percent chance, and women with BRCA2 have a 69 percent chance, of being diagnosed with breast cancer. In addition, those with BRCA1 have a 44 percent chance, and those with BRCA2 have a 17 percent chance, of developing ovarian cancer. This is difficult news to hear. So how do you handle your emotions upon hearing the news?


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Timing is everything

You have to be emotionally ready to test for the mutation and then be prepared to learn the outcome, says Kathy Schneider, senior genetic counselor at Dana-Farber Cancer Institute’s Center for Cancer Genetics and Prevention. “Don’t do it when you are in the middle of finals or a messy divorce. Think about what emotional reserves you have because it may be overwhelming to add one more thing.”


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Stay calm while you wait for the results

“The waiting period is the hardest; it can be a long three weeks,” says Schneider, of the average time from when you give a blood or saliva sample, to when you hear the results. It’s completely normal to feel “fear and anxiety,” she says. “But this is why genetic counselors spend a lot of time preparing people. We talk about ways to deal with that.”


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You’re in shock

“It’s heavy,” says Schneider, about learning you carry one of the BRCA mutations. You may be young and healthy but you decided to test for the gene mutation because you have a family history of cancer. Perhaps your mother or grandmother have the disease. When you test positive, suddenly you’re thrust into new territory that you don’t know how to cross. The news “brings up feelings of fear, concerns about your health, and worries about passing the gene mutation along to your children,” she says.


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Digest the information

Now that you know you are a carrier of the gene, you don’t need to rush to make any decisions. Take your time to digest the information and talk to your genetic counselor about all your options. Do you want to have a prophylactic mastectomy? Do you want to wait until you have children to remove your ovaries? Work with your doctor to come up with a timeline for surgery and/or increased surveillance.


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You do not have cancer

“I remind people that testing positive and finding this genetic alteration does not mean you have cancer or will ever get cancer,” says Schneider. “You are healthy. The whole purpose of doing this is to reduce the risk of cancer or catch things at an early stage when it is more treatable.”


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It’s like going through the stages of grief

Finding out you carry a BRCA gene mutation may hit you hard, says Gail Fisher, deputy director of the BRCA Foundation, who herself tested positive. “Feelings are like a tidal wave; they envelope you, soak you, and make you feel like it’s the end of the world. And then they pass. It’s important to feel the whole range of emotions so they can pass through you and you can return to your ordinary state.”


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When you test negative

When you learn you are not a carrier of a BRCA mutation, you may breathe a sigh of relief, not only for yourself, but for your children who you might have passed on the gene mutation. If your family has a lot of cancer, you may still want to continue increased surveillance and testing. Discuss this with your doctor.


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You may feel guilty

Some people have “survivor’s guilt,” says Schneider. “If you have two sisters who have had breast cancer and have had positive BRCA results, and you don’t, you might feel guilty about that.” Remember, she says, you had no control over whether you got this gene or not.


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Find sources of strength

If you have tested positive, find people who can be strong with you at this time. It may be friends or relatives or a support group or online chat room where you can vent and share your fears and worries anonymously. Connect with others who have been or are going through this at The Breasties, Bright Pink, and Facing Our Risk of Cancer Empowered (FORCE).


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How to 'embrace your choice'

Whatever decisions you make about your next steps can carry anxiety, says Fisher. “Embrace your choice” once you’ve spoken to your genetic counselor, doctor, family, and friends. “There is no one right answer, but you will make the right choice for you.”