Angelina Jolie (and I) Will Have Another Preventative Surgery

A preventative mastectomy was only the beginning.

Angelina Jolie’s announcement of her prophylactic mastectomy last month gave me the courage to write about my experience as a carrier of the BRCA1 mutation and my mastectomy to prevent cancer. Readers used words such as “brave,” “courageous,” and “inspiring” to describe my confession. I appreciate those comments, and I do agree that willingly removing my cancer-free breasts in my early thirties took strength. I wanted a different outcome than my aunt Rose and my grandmother, who both had breast cancer and passed away, and my sister Mary, and a cousin who both live with the disease. And the recent death of Debbie Martin, Jolie’s aunt, from metastatic breast cancer reminds me how deadly this disease is.

But the truth is, I’ve been feeling like an imposter.

There’s another preventive surgery, a bilateral salpingo-oophorectomy, a surgical procedure that would excise both my ovaries and fallopian tubes and significantly reduce my risk of developing ovarian cancer. As a BRCA mutation carrier, I was counseled to have this surgery when I reached the age of 40 (some doctors say age 35) or completed childbearing, whichever comes sooner. People magazine reported that Jolie plans to have this surgery, too, as women with BRCA mutations are not only at high risk for developing breast cancer, but also ovarian cancer. Chemoprevention and surveillance are also options, but at this time, surgery is the best tool to manage ovarian cancer risk. While the lifetime risks of ovarian cancer in the general population is 1.5 percent, women with BRCA mutations have a 60 percent lifetime risk and tend to develop ovarian cancer at a younger age. If I want to give myself the best chance of survival given my hereditary risk, I should have the surgery.

Removing my ovaries would thrust me immediately into surgical menopause, 15 years earlier than the age my mother went through the process naturally. I’m still building up the nerve to go through with it. For at least three years, I’ve set surgery dates with my gynecologic oncologist and then canceled. In the meantime, I continue with the surveillance appointments for high-risk patients like me. Every six months, I go to Massachusetts General Hospital’s Gillette Center for Gynecologic Oncology for the ovarian cancer screening appointment: a transvaginal ultrasound, a pelvic exam, and a blood test. I’ve traveled to this hospital dozens of times, but on more than one occasion on my way to this particular appointment, I’ve driven right past the exit and kept on going down Storrow Drive. Everyone is as kind as possible and tries to cause me the least amount of discomfort as they look inside me for cancer, but we all know these appointments do nothing to prevent ovarian cancer, only detect it. And at a cancer center, they see women all day long who did not have my opportunity to prevent it. After the appointment—the ones I make it to—I always cry, always discreetly, sometimes in the Yawkey building hallway with beautiful views of Beacon Hill and the State House dome, and sometimes in the parking garage.

A year and a half ago, I was serious enough about the surgery that my friend Marie planned a party for me. The party was the opposite of a baby shower, a way to mark the end of my reproductive years (which sadly, had not resulted in any babies). Girlfriends saved the date, my friend Joanne bought a plane ticket from Chicago, and Marie ordered the food. However, as the party date neared, I called it off. “I’m sorry,” I told them. “I’m just not ready.”

It’s not the risks of surgery or the recovery that scares me. An oophorectomy is not as immediately physically challenging as the removal and reconstruction of my breasts, which for me, has required years of physical therapy to stretch and strengthen my upper body. The oophorectomy is a minimally invasive, laparoscopic surgery. If it’s anything like the gallbladder surgery I had last summer, I can expect to be hanging out at an all-day cookout 48 hours later.

I’m afraid of suddenly and permanently altering the natural rise and fall of my hormones. I fear what this change will do to who I am and interfere with my quality of life. There’s also the end of babies (I know about the many other terrific options for creating a family, but that doesn’t change how profoundly sad I feel about permanently closing this particular door). There are serious side effects from going into menopause at an early age, although symptoms vary from person to person–symptoms like cardiovascular problems, hot flashes, loss of bone density, and changes in sleep, mood, memory, weight, and energy level. I can partake of hormone replacement therapy, but this will be at a fraction of what my ovaries produce. When I bring up concerns, my doctor nods and says, as diplomatically as possible, “We have ways of treating those symptoms, but unfortunately, our options aren’t so good once ovarian cancer develops.” I know plenty of young women who have had the oophorectomy, and they seem perfectly healthy. Some say they feel better than ever. What I’m afraid of is that I won’t have that kind of outcome and there’s no going back.

When they hear about my surgery plans, science writer friends warn me about reduced life expectancies for young women who have oophorectomies and email the studies. (Other people tell me about studies specific to women with BRCA mutations that an oophorectomy will increase life expectancy). I calculate morbid math problems trying to predict which death would be earlier and worse: ovarian cancer or the long-term effects of early menopause. I find out when my aunt was diagnosed with ovarian cancer, age 62, and subtract 10 years from that. I figure I could wait until I’m 52 to have the surgery and going through menopause naturally, but this is more than a decade past the recommended age for the preventative surgery. My aunt died seven years after her diagnosis. I tell myself that maybe I’ll be one of those mutation carriers who don’t develop the disease.

And then there’s the reality of the equation. As far as cancers go, ovarian cancer is called “the Silent Killer” for a reason. Often, symptoms don’t assert themselves until the cancer has progressed. While 75 percent of women survive the first year after diagnosis, only 46 percent are still alive five years later. Ovarian cancer is the No. 1 cause of death of reproductive cancers in women. Each year, more than 14,000 women in the U.S. die because of ovarian cancer.

A few years ago, at a meeting for people with hereditary cancer, I meet a vibrant woman, the founder of a nonprofit for cancer patients, and she tells me she has ovarian cancer. She seems energetic and healthy. You could never tell. See, I tell myself, people survive ovarian cancer. Two years later, she is dead.

Every six months, I encounter patients in my oncologist’s waiting room and the ravages of this disease become real. I see the grief on their faces, what cancer has done to their bodies, and their caretakers helping them walk or pushing their wheelchairs. I see them and I feel stupid that I haven’t had the surgery yet. I’m rejecting the greatest gift that someone could give me: the chance to change my future.

Any woman I’ve met who carries a BRCA mutation and also watched their mother die of ovarian cancer had the surgery, some within weeks of finding out about the genetic mutation. It’s been years since I’ve known about my risk for ovarian cancer and my opportunity to reduce it by 90 percent. I’ve been warned. And yet, I haven’t stepped out of this deadly path.

But I will. I’m getting ready. I just hope I haven’t waited too long.

  • Suzan Wolpow

    Again this piece too, is so incredibly powerful. Your words provide us with such a clear feeling of the enormity of the painful dilemma. Thank you for sharing your deeply personal struggle that speaks to deep truth we all have to deal with at one (or multiple) point(s).

  • http://www.AliaBucciarelli.com/ Alia Bucciarelli

    Thank you, once again, for a window into your inner world. The prior focus on mastectomy by the media, while important and appropriate, left me with questions about BRCA mutation and management of risk for ovarian cancer. Thanks for sharing you personal insight and research into this matter, too.

  • Amy Byer Shainman

    I really enjoyed reading this. Thank you. I ditto the comments from Alia and Suzan below. We must all keep sharing our stories. Here is mine: http://amybrcastory.eventbrite.com

  • Sabina Chen

    It is vital that you share your story, Grace. Your courage inspires me, both as a writer and a woman.

  • Irene Buchine

    Grace,
    Your courage permeates this story. Thank you for sharing it.

  • Joanne Diaz

    This is such an engaging, thoughtful essay. Thank you for sharing your insights, Grace. I am so proud to know you, and so inspired by your ability to use your writing to inform and illuminate.