When Lauren Steinberg found out she was BRCA positive two years ago, she immediately called her father.
“My grandmother — my dad’s mother — died before I was born, but it was still weird to talk to my father about my 23andMe results,” says Steinberg, 28, the founder of Queen V, a feminine wellness and women’s health company, who learned she has the high-risk mutation after taking a 23andMe test. “It might be generational — I feel like my generation is more open to talking about topics that have been traditionally considered taboo.”
In some ways, Steinberg says, it has been easier to talk to her friends about this than her family, including her younger brother, who hasn’t been tested yet, and her younger sister who tested negative.
Welcome to the sometimes awkward world of sharing with your family and friends that you’re a previvor (a term used to describe individuals at high risk of cancer) with an inherited predisposition to the disease. After all, despite how far we’ve come in our awareness of hereditary cancer risk, some people have no firsthand experience with this health challenge — or what to say when discussing it — and that’s why what they end up saying may seem uninformed or even insensitive.
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Expert Advice on Talking to Loved Ones About Increased Cancer Risk
One way to discuss this with the people in your life is to explain things in very simple terms, suggests Catherine Skefos, a genetic counselor in the clinical cancer genetics program at MD Anderson Cancer Center in Houston.
“I think it’s powerful when you explain this simply, that there’s a difference in your body’s instruction manual that impacts its ability to prevent cancer,” she says. “Also, we can remind others that we’re all at some risk of getting cancer — that’s why we have mammograms and other screenings.”
Then, if you feel like a friend or family member might jump to an erroneous conclusion about your news, reframe this information.
“You can consider saying something like ‘This isn’t information I thought I wanted to find out, but at least I can take steps to reduce my risk,’” Skefos says. “‘This information enables me and my doctor to stay ahead of things, to do more screening and to reduce my risk of cancer.’ Speaking directly can be really powerful.”
Gene Variants and Information as Power
Increasing awareness is the exact empowering path Steinberg has been on since she learned of her BRCA status. She goes to all her screenings, including an ovarian ultrasound and breast MRI twice a year. She has also frozen her eggs as part of her plans for the future.
“When I first found out that I had this gene it wasn’t a ‘woe is me’ type of feeling,” she says. “It was a feeling of ‘Man, had my grandma had access to a test like this she might still be alive.’ I would have been able to meet her. It was a feeling of gratefulness that this technology exists.”
Projecting that positivity as you communicate about your high-risk status may take a little bit of thought and may mean only sharing this information with those you think will intuitively know the right things to say.
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Ask for Support Instead of Advice
“What most people want is understanding and support when they share something like this,” says Jill Stopfer, the associate director of genetic counseling at Dana Farber Cancer Institute in Boston. “All you want is for someone to say ‘Sounds like you have some tricky decisions in front of you.’ You’re not looking for someone to say ‘This is what I would do’ or ‘I feel so sorry for you.’”
And, if you just feeling like venting, say so.
“You can say to your friend or family member, ‘I’m just looking for support. I don’t need you to give me advice,’” Stopfer says.
Or you could follow Steinberg’s lead and take the high road, putting the emphasis on empowerment and gratitude whenever you discuss your elevated cancer risk with others.
“A topic like cancer is scary and I think it helps to take a lighthearted approach,” she says. “When I found out I was high risk, I told my friends how grateful I was to know about the gene, to screen early and to prevent myself from getting cancer. And you know what? I encourage them to get tested, too.”
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