Why I Chose To Have a Preventative Double Mastectomy

Angelina Jolie’s confession opened the doors for women—like me—to come forward and talk about the realities of breast cancer.

By | Hub Health |

Like Angelina Jolie, I carry the BRCA1 gene mutation and several years ago at age 34, opted to have both breasts removed even though I didn’t have a cancer diagnosis. It was hard enough to make the decision to have the surgery—I spent a year preparing emotionally and physically from the time the genetic counselor told me my test results—but what made it more difficult was hearing critical comments imploring me not to take such a radical step.

Instead of amputating my breasts, people would advise, I could eat better and exercise more. I should hold off on the preventive surgeries because a cure for cancer might only be a few years away. Besides, why worry about breast cancer when I could get hit by a bus or die in a car accident? Women who actually had a breast cancer diagnosis chose lumpectomies and radiation so if I didn’t even have cancer, why would I consider an action so drastic as to remove my breasts?

It didn’t sway critics when I informed them that hereditary breast and ovarian cancer meant my lifetime risk for breast cancer was up to 87 percent and for ovarian cancer, up to 60 percent. Over her lifetime, a woman in the general population has a 13 percent risk for breast cancer and a 1.5 percent risk for ovarian cancer. In all honesty, I had trouble understanding what those numbers meant myself. What made me take action like Jolie (and countless others) was that I had glimpsed my future, and I saw misery. I wanted to spare myself this suffering. As my friend said, “If someone if forcing you to eat a shit sandwich, might as well take a small bite.”

I knew cancer up close. I helped care for my then 2-year-old niece when she was going through surgery and chemotherapy for a rare pediatric eye cancer, retinoblastoma, at Massachusetts Eye and Ear Infirmary and at Massachusetts General Hospital (MGH). A year later, I spent every spare minute with my sister Mary during her treatment for breast cancer at Dana Farber. It was her diagnosis at age 36 that sparked my genetic test.

After my genetic counselor broke the news that my father had passed on the BRCA1 mutation to me, I washed my face of tears then took an elevator at MGH to the floor where my sister sat propped up in a hospital bed. It was the first time I’d seen her since her mastectomy. There’s no other way to say this: she looked like she was dying. Her bare head was covered with a cap; her skin was gray. She tried to smile when I walked into the room, but instead, grimaced in pain. After six rounds of chemo and a grueling surgery to remove both breasts, her body had been through hell. I hated to cause her more pain with my news. She consoled me with, “You don’t have to go through what I’ve gone through. You can prevent this.”

I knew I had the better deal—with the genetic information, I could prevent cancer rather than wait to treat it, but I wasn’t ready to pay the price with my breasts. So instead of surgery, I had MRIs and mammograms. After each of these surveillance tests, I’d be called back for more tests. The doctors saw something suspicious. I had biopsies. I didn’t sleep much those months and instead would lie awake in a panic, obsessively scanning my breasts with my fingers, reading the tissue for hidden tumors. Although I kept my breasts, I paid a different price than my sister Mary, who will always be a breast cancer survivor and live with the spectre of its return.

The suspicious spots in my breasts weren’t cancer nor were they pre-cancer, but atypical ductal hyperplasia, which was described to me as a pre-pre-cancer. These cells could develop into malignancies. And still, I wasn’t ready for the surgery. What would happen to my identity without my breasts? What if I had babies and wanted to breastfeed them? And what would happen to pleasure? I was horrified to learn that in place of my breasts, I would be reconstructed with insensate “breast mounds.” I didn’t want anything to do with breast mounds. And at the time, my surgeons didn’t recommend for me the nipple sparing procedure that Jolie chose. Have you ever seen a Barbie doll with the shirt off? That.

What pushed me to schedule the mastectomy was watching Joanna Rudnick’s, “In the Family,” (now streaming free online on PBS) while attending a conference on hereditary breast and ovarian cancer by Facing Our Risk of Cancer Empowered (FORCE)  I had a scholarship to the conference in memory of Linda Pedraza. While watching Rudnick’s film, which documents her journey as a “previvor” a term coined by a FORCE community member to describe “a survivor of a predisposition to cancer,” Linda Pedraza spoke to me. I knew she had recently died and her words in the film about not messing around with life helped me make the decision. I no longer doubted. I wanted to spare my future self and loved ones.

Jolie comments that the genetic test, “at more than $3,000 in the United States, remains an obstacle for many women.” Myriad Genetics, which I toured in Utah a few years ago, holds the patents on the BRCA1 and BRCA2 genes and in April, the Supreme Court heard challenges to this patent (a response from the Court is expected this summer). Reading about this case on the ACLU blog, I learned that filmmaker Rudnick had been diagnosed with cancer after all. She writes, “The worst part about being diagnosed with breast cancer is knowing that I had the knowledge to prevent it…Why did this happen to me when I knew how high the stakes were?”

I won’t sugarcoat it. Preparing for and recovering from my mastectomy was difficult. I went with a simple subcutaneous mastectomy with immediate reconstruction and was on the operating table for about six hours. I was not anyone I recognized in those intense first days after the surgery—I was a body in pain and floated alone in that ocean of hurt, despite all the good wishes, flowers, and cards. Mary assured me that every day, I would heal a little more. She told me to look for signs, even if they were barely perceptible, that I was getting better.

She was right. I got better. It’s been several years since my surgery and I hardly ever think about my lost breasts. I’m grateful for my “breast mounds.” A few years ago, I attended a FORCE conference with my youngest sister Liza and cousin, both with the BRCA1 mutation and considering mastectomies, and dragged them to an event where women showed and told about their surgeries. At some point, probably after some wine, I surprised myself by taking off my shirt at the crowded party. No one would ever mistake what I have now for what I had before the mastectomy, but I wasn’t ashamed to show the reality of my body. I recall allowing curious women to feel the size and weight of my breasts, to trace where my implant was attached to muscle.

I appreciate that Angelina Jolie broke her privacy and told her story. Hopefully her story will raise awareness about this small subset of breast cancer cases and inspire a conversation about gene patenting. At the very least, I hope Jolie’s story reduces the stigma for those who choose mastectomy in the face of a genetic predisposition to breast cancer. A few months before my surgery, the New York Times published a front page piece on a woman my age with the BRCA1 mutation who chose a mastectomy. After that article came out, my critics didn’t think I was so crazy to choose surgery. The weight of judgment lifted and from then until my surgery date, I felt as much relief as a 34-year-old woman heading into a preventive mastectomy could enjoy.

  • disqus_nJER92jGov

    thank you for this personal perspective. it’s easy to get lost in the news of the celebrities who have made these choices, but the untold stories are the ones that really hit home for me. Congratulations on taking ownership over your body and for using your information to save your life.

  • Michelle

    Thank you for this candid and well-written account of your experience. I knew that you’d gone through this surgery, and that it was difficult, but what I learned in reading this is how much research went into the decision and how much insensitive criticism you faced from friends. I admire your bravery in dealing with all of that and I admire the fact that you continue to be involved in the issue of breast cancer prevention and that of gene patenting.

  • Flo F

    Grace – Thank you for this honest and brave article. By sharing your experiences I believe that you, Liza and Angelina are empowering and inspiring women, who have a difficult decision to make, in ways that their doctors or families never could.

  • Annie Vinton

    Amazing article – very honest and I’ll be sharing on Facebook and with my friends and family. Your courage to tell this story will no doubt save a few lives. Awesome.

  • http://www.facebook.com/sabina.chen Sabina Chen

    Courageous writing from a brave and beautiful woman. Brava, my friend.

  • http://twitter.com/OliviaOfLovely Olivia March

    Ah, amazing! So moving. Thank you for sharing!

  • Alex

    Very deep and realistic article. Deed of fearless woman. It was a very brave and courageous step , which should be an example to many women going through the same path.

  • Mindy Nierenberg

    I have tears streaming down my face reading Grace’s powerful rendition of her story of courage which may help countless women. I am grateful for your willingness to share and move us with your words.

  • Peggy

    Grace-your decision shows such courage. I am happy thinking of you in good health as you grow older.

  • Vanessa Z.

    Wow, so moving. You are so brave and your actions are so inspiring. Thank you for this piece.

  • http://www.facebook.com/colleen.fortuna Colleen Ahern Fortuna

    While I appreciate the power of celebrity, I am deeply moved when otherwise private people share their stories for the greater good. Thank you for your courage. Godspeed.

  • Margot

    I feel honored to know you Grace! So brave to share your story. Thank you!

  • Jennifer W

    I couldn’t even begin to imagine how hard it was to share such a personal story. Your courage and bravery are truly inspirational and I am so honored to have been able to learn from you and so proud to call you my Professor.

  • http://www.facebook.com/ThePoetsLizard Luisa A. Igloria

    Honored to know you, Grace. Babaylan, woman warrior. xo

  • http://www.facebook.com/meghan.m.reid Meghan Martel Reid

    What an inspiring article, written by a woman who I had the pleasure of growing up down the street from. My mom fought and won breast cancer, and I too intend to be tested for the gene.

  • Lillian Howan

    Inspiring and courageous. Thank you, Grace! I’m blessed to know you.

  • Carolyn

    Another courageous story from an incredibly brave woman…Grace, what you may have lost physically, you have compensated ten fold with your strength and writing…thank you for sharing so much of yourself with your readers!

  • http://twitter.com/hillaryrettig Hillary Rettig

    Wonderful article, Grace! I’m sure you helped many people.

  • Trevor

    Truly Inspirational. It is brave of you to go through such a surgery and brave of you to share this very personal story. You are broadening the view to people who do not know much on this subject and helping critics become more understanding.

  • mtnmamma

    Do they save your nipples and arereo’s. I’m recovering from ovarian cancer and also BRCA 1. When I’m stronger I’m going to get this surgery.