Well+Good’s senior staff writer, Lisa Elaine Held, is also a BRCA mutation carrier. Here, she offers her thoughts on Angelina Jolie’s famed editorial.
I was 19 when I found out I carried a mutation of a gene called BRCA2, a gene now enjoying paparazzi-level celeb status, thanks to its malfunctioning in the body of the most famous actress in the world. (Angelina’s mutation is BRCA1, mine is BRCA2—the two are often lumped together and vary only slightly in terms of cancer risk.)
My mother died shortly after learning she had passed it on to me, and soon after, I accompanied my aunt (my mom’s sister) to a chemotherapy treatment for her metastatic breast cancer.
We knew close to nothing about the gene at the time, and during her treatment, my aunt (who has since passed away) casually asked her brash oncologist to give me, a college sophomore, advice. “Find a man, get married, have children right away, and then have your breasts and ovaries removed as soon as possible,” he said, without missing a beat. He was a real sweet talker, that guy.
Four years later, at my first appointment with my own doctor, who was about to start me on a never-ending “preventative” regimen of mammograms, sonograms, and MRIs (which wouldn’t actually prevent anything), she reviewed my family history and test results and then said, “If I were you, I’d have my breasts removed by the time I was 25.”
The jury was in, so that’s what I decided to do. Not because I was brave or intelligent or well-informed (although obviously I am all of those things), but because I was scared. Shitless.
I prepared for the inevitable surgery by diving into the world of BRCA head first. I became an outreach coordinator for FORCE, the charity dedicated to this population, to help other women understand their options. I attended its conferences, where I sat in sessions about silicone versus saline implants and nipple-sparing procedures. I started a full-time job for a program at a hospital that helped high-risk women, where I organized seminars and support groups for BRCA mutation carriers. A reporter from ABC News quoted me in a horrifically headlined story called “Going Under the Knife to Head Off Cancer” saying “I know that I can survive surgery, but I don’t know that I can survive cancer.” After all, no one in my family had.
Then, one day, I don’t remember when or why, I took a step back and realized that I was heading full-steam towards something I had barely allowed myself to consider. It was nice having a solid plan, but I decided that I had it for the wrong reason—fear. I decided that I would slow down and consider my options. I would figure out which path was right for me—surgery, surveillance, lifestyle modifications—and only me.
Today, at 27, I’m still considering. I read the research, I eat my broccoli, I show up for my screenings, and I wait for certainty to strike. Of course, it probably never will.
Stories about BRCA mutations always come down to the surgery—it’s extreme, it’s unbelievable—but the scalpel is not really as scary as the unanswerable questions.
If you choose the prophylactic mastectomy, maybe you’ll get uterine cancer instead. Maybe you’ll never feel whole again and maybe you never would have gotten breast cancer, anyway. If you choose to keep your cursed breasts, maybe they’ll kill you, or maybe they’ll just always be there, real and perky and perfect.
No woman, even bad-ass Angelina Jolie, can claim total confidence or certainty. Every decision comes shaken with equal parts facts, fear, and faith. The choices, called courageous, are made while we’re shaking in our health food stores and hospital gowns. Had Angelina chosen to keep her breasts and get intensely screened or to drink green juice and work out twice as much and eschew traditional medicine, her coming out would not have attracted as much attention—but to me, it would have been just as heroic. What makes Angelina’s choice courageous, to me, is that she made a beyond-difficult choice. And she owned it (in the friggin’ New York Times).
Eventually, I’ll make my own choice, and I’ll try to own it a la Angelina. Will I be brave like her? I don’t know. In the end, we’re all just doing what we can to avoid the fates of all of the other women in our families who were heralded for their bravery—as cancer slowly killed them. —Lisa Elaine Held
Have questions about BRCA? Read our cheat sheet with facts from a top breast surgeon and BRCA gene expert, here.