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Why Angelina’s choice matters

Lisa Elaine Held

My mom and I at the beach in the late 80s, before the BRCA mutation was even discovered.

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.”

Lisa Elaine Held

If a parent has a BRCA mutation, children have a 50% chance of inheriting it. In my family, I inherited it, while my sister, Audra (at left), did not.

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.

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  1. May 20th, 2013 at 11:55 am

    Your story is so moving and you are so young. I feel bad that you have to deal with such a heavy load at such a young age. I am one of the women featured in the book Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions. Read out stories and we provide a lot of medical information too. You decision may also change depending on the stage in your life. I choose surveillance for many years, but after having kids I changed directions and chose surgery. A one-step procedure by Drs. Ashikari and Salzberg. Good luck to you. Just be proactive.

  2. May 20th, 2013 at 2:24 pm

    Thank you for sharing this story; there has not been much of a conversation so far–it seems there has only been wholesale endorsement of the prophylactic mastectomy. I wouldn’t say that is a bad choice, but it is not the only choice, and I am glad to hear another voice. I also think a lot of the people weighing in have not actually had to face this particular decision, as you have. We make the best choices we can knowing what we know, remain open to new information, and stay willing to change our minds. But after a surgery like that, there is no going back.
    BTW, I posted an article on MindBodyGreen a few days before Angelina’s announcement: http://www.mindbodygreen.com/0-9443/8-easy-ways-to-be-proactive-about-your-breast-health.html. Share or comment if you’re moved to.

  3. May 20th, 2013 at 10:35 pm

    You are beautiful! So inspired. Thank you for sharing XO

  4. Max Goldberg
    May 22nd, 2013 at 12:36 pm

    Hi Lisa,

    Thank you so much for sharing your storing and for being so candid and open. Wow, very moved by this!

    Max

  5. May 26th, 2013 at 3:28 pm

    Thank you so much for sharing. Very courageous of you! I hope you and your sister stay cancer-free…

    love,
    sandy

  6. August 24th, 2013 at 12:04 pm

    Angelina’s decision was a tough one, probably made either though by the fact that she chose to undergo reconstruction. Angelina has breast implants now, and doesn’t look as if she has had any surgery. This is always a great option for women who are struggling to decide what to do when it comes to a mastectomy.

  7. June 7th, 2014 at 10:36 pm

    You have to ask yourself if you got breast cancer, would you accept that you were aware of the strong possibily and chose to not take preventative measures?
    I didn’t find out I was BRCA1 until after I developed cancer – at age 29. I got the double mastectomy anyway, but if I could have done it beforehand (if I was fortunate enough to be aware of my genetic mutation), without chemo and being able to keep both my nipples, you bet I’d jump at the chance.

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