Three years ago, Mary Margaret, 31, from Vermont, learned that her BRCA gene has a mutation that may well one day cause cancer. “I’m not actually sick. I may not ever be sick,” she says. “I’ve just been told I might get something eventually.”
It’s a strange experience, to be told you’re fine — but for how long? “It felt like I was grieving something, but what do I have to show for it?” she says.
Margaret is a previvor: She knows she’s statistically likely to get cancer, but she’s never had it, and could possibly never get it. “Being at this point in the journey is very different from actual illness,” she says.
Mutations of the BRCA genes are inherited — parents have a 50% chance to pass it on — and many people discover they have it when a family cancer cluster triggers testing: Margaret and her sister and brother all got tested when their mother was diagnosed with breast cancer. A mutation of the BRCA1 gene, according to the National Cancer Institute, gives carriers a 72% chance of developing breast cancer and a 44% chance of ovarian cancer, whereas BRCA2 triggers a 69% chance of breast cancer and a 17% chance of ovarian cancer. About one in 400 people have a BRCA mutation.
The conversation around BRCA mutations is usually about just that: cancer. But Margaret and others like her find themselves in a slightly different category: They know they have a rogue gene, but they also know that they may never get cancer and could end up spending their whole lives worrying about nothing.
Preventative surgery looms large for BRCA carriers, who are advised to consider double mastectomies and oophorectomies to reduce their breast and ovarian cancer risks. It’s a lot to take in: “I haven’t made a plan to have surgery yet. I’m still using my equipment,” Margaret laughs — she has a baby and wants to have another. “Let me sit back for a minute, give it some time!”
Although BRCA cancers are often more aggressive and happen when people are younger, Margaret’s age means she can afford to wait — although 40% of breast cancers in women under 35 are hereditary, the average age…