At the time, my son was just a year old, and early on, during medical appointments, my healthcare providers would make recommendations, adding the caveat, “Well, you’re BRCA.” Actually, I’m Lambeth, I wanted to scream. While those early days of discovery feel like a lifetime ago, I find it incredible that people still get awkward when it comes to discussing this fact of my life — even though Angelina Jolie has helped demystify what it means to carry a high-risk gene variant. To be honest, I can’t believe there is still so much confusion about genetic variants. As recently as the beginning of the COVID-19 pandemic, two friends told me I’d likely get to the front of the vaccination line due to my “medical history.” That made me feel like they weren’t even listening to me when I discussed the prophylactic part of my process — that I had surgeries to remove my ovaries, fallopian tubes, and breasts as a brave and preventive measure, not because I was ever sick. The worst, however, is when friends tell you about a new breast cancer diagnosis in their family and then say, “Well, at least none of us are BRCA,” as if this negates their own breast cancer risk. It only serves to make a person with a high-risk feel even worse. Plus, hello: BRCA variants are hardly the only risk factor in breast cancer. Unfortunately, I’m not alone in this feeling that some people just don’t get what to say on this subject, no matter how far we’ve come or how many other celebrities (Christina Applegate and Sharon Osbourne, to name two) have shared their personal stories. To prove my point, I reached out to some incredible women who carry a high breast cancer risk. RELATED: How to Talk to Family and Friends About Hereditary Breast Cancer Risk
1. Don’t Compare a Mastectomy to a Cosmetic Surgery
Take Gabrielle Fishman. Her close friends haven’t exactly said the right things to her as she counts down the days until her mastectomy followed by DIEP (deep inferior epigastric perforators) reconstruction surgery next month. “Two people that I care about said, ‘Oh! It’ll be like a free tummy tuck and boob job,’” she says. “All I could think was ‘Nope, that is not correct.’”
2. Don’t Downplay What Someone Is Experiencing
In 2010, shortly after Jane E. Herman, now an advocate in the hereditary cancer community, found out she carries a BRCA gene variant, a friend made it seem like the discovery wouldn’t change her life that much. “I’ll never forget how she said, ‘It’s not such a big deal. You’ll just need to get a few more mammograms every year,’” she recalls.
3. Avoid Jumping to Conclusions
What’s really upsetting is when people jump to conclusions about your overall health, says Stacey M. Eisler. “It really hurts when people you consider close friends or family refer to you as someone who went through surgeries because, in their minds, they think you had breast or ovarian cancer when, in fact, my surgeries were all prophylactic to reduce the risk of ever getting these cancers,” she says. “For some reason these people view me as a cancer survivor, which I never want to take credit for.” Ultimately, we previvors are sure about one thing: We’re mighty, we’re powerful, we’re strong, and we’re no one to feel sorry for.
4. Create Space Instead of Taking Up Space
“Having just recently gone through my surgeries, I was surprised by how many people became emotional when I shared my situation with them,” says Tremayne Cunningham. “No matter how matter-of-fact I was about it, they behaved as if I said I had 90 days to live. Some even cried, which made me become emotional. I found myself comforting them!” Cunningham’s message is clear — and powerful — and speaks for every previvor who has ever been upset about something that was said in an offhand or even offensive way. “This is not a death sentence, so please uplift BRCA previvors with praise for being brave,” she says. “Don’t cry tears that we may not have cried ourselves. We will come out the other side stronger than ever. Think of us as caterpillars transforming into butterflies. I myself am a phoenix.” RELATED: 8 Things Not to Say to Someone Who’s Had a Mastectomy
