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My preventive mastectomy: Staying alive for my kids

By Allison Gilbert 

Allison Gilbert and her mother, Lynn, in 1995 on the day Gilbert got engaged. Her mother died two months later from ovarian cancer.

October is National Breast Cancer Awareness month. Author Allison Gilbert shares why she chose to undergo a double mastectomy after testing positive for the breast cancer gene.

I’m not a helicopter parent and my children would tell you I don’t bake cupcakes for their birthday parties. But I’d readily cut off my breasts for them — and recently, I did.

Removing breast tissue uncompromised by cancer is relatively easy. It took the breast surgeon about two hours to slice through my chest and complete the double mastectomy seven weeks ago.

The time-consuming part was left to the plastic surgeon who created new breasts out of my own belly fat so I could avoid getting implants. Total operating time: 11.5 hours. And I don’t regret a second.

The decision to have surgery without having cancer wasn’t easy, but it seemed logical to me. My mother, aunt and grandmother have all died from breast or ovarian cancer, and I tested positive for the breast cancer gene.

Being BRCA positive means a woman’s chance of developing breast and ovarian cancer is substantially elevated.

“Patients with BRCA1 or BRCA2 mutations have 50%-85% lifetime risk of developing breast cancer and up to approximately 60% lifetime risk of ovarian cancer,” according to Karen Brown, director of the Cancer Genetic Counseling Program at the Mount Sinai School of Medicine in New York.

Gilbert at age 5 or 6 with her mother on a ferryboat.

By comparison, the lifetime risk of breast cancer for the general population is 13% and 1.7% for ovarian cancer.

CNN iReport: Tested for the breast cancer gene?

At my gynecologist’s urging, I tackled the threat of ovarian cancer first. Because the disease is hard to detect and so often fatal, my ovaries were removed in 2007, a few years after my husband and I decided we were done having kids.

The most difficult part of the operation came in the months that followed: I was thrust into menopause at 37. Despite age-inappropriate night sweats and hot flashes, I was relieved to have the surgery behind me and wrote about it in my book, “Parentless Parents: How the Loss of Our Mothers and Fathers Impacts the Way We Raise Our Children.”

The emotional release was short-lived. Less than a year later, my mother’s sister was diagnosed with breast cancer and died within four months.

Aunt Ronnie’s death set me on a preventive mastectomy warpath. I had already been under high-risk surveillance for more than a decade — being examined annually by a leading breast specialist and alternating between mammograms, breast MRIs and sonograms every three months — but suddenly being on watch didn’t seem enough, and I began researching surgical options.

Gilbert, her husband, Mark, and their children, Jake and Lexi, at a birthday celebration.

Regardless of my family history and BRCA status, I still went back and forth on having a mastectomy. I vacillated between feeling smug and insane.

Over the years, I’d read too many stories like the one in the Wall Street Journal last week, on doctors who make fatal mistakes (up to 98,000 people die every year in the United States because of medical errors, according to the Institute of Medicine). I was anxious about choosing a bad surgeon and a bad hospital.

The stakes felt even higher after I decided to go an unconventional route to reconstruction. Implants generally offer a quicker surgery and recovery, but they’re also known to leak, shift out of place, and feel hard to the touch and uncomfortable.

I would also likely have to replace them every 10 years — not an unimportant consideration, since I’m 42.

Ultimately, on August 7, I underwent double mastectomy with DIEP (Deep Inferior Epigastric Perforator) flap reconstruction. The benefits would be that my new breasts would be permanent, made from my own skin and flesh, and I’d be getting rid of my childbearing belly fat in the process.

Gilbert and her husband, Mark, near their home in Westchester County, New York.

I had multiple consultations with surgeons who explained every reason not to have the procedure. They warned me that I’d be under anesthesia unnecessarily long and I’d be opening myself up to needless complications.

While every concern was valid, it wasn’t until I was six doctors into my investigation that I realized the likely reason why I was getting such push-back. The plastic surgeons I was consulting, despite their shining pedigrees and swanky offices, couldn’t perform a DIEP. The procedure requires highly skilled microsurgery and not every plastic surgeon, I learned, is a microsurgeon.

It also requires a great deal of stamina. The doctors I interviewed who perform DIEP flaps were generally younger and fitter than those who didn’t. On average, a double mastectomy with DIEP reconstruction takes 10-12 hours, while reconstruction using implants can take as little as three.

In total, I met with 10 surgeons before choosing my team, and while I am now thrilled with the outcome, all the years of research and worry took a toll on me.

The worst moment came one night when my husband and I were in bed. I began to cry uncontrollably and wished I could talk with my mother and aunt about which procedure to have, which doctor I should choose, and whether I should even have the surgery.

Gilbert's Aunt Ronnie and Gilbert's daughter, Lexi. Her aunt died from breast cancer in 2008, four months after the diagnosis.

Then a moment of bittersweet grace clarified what I needed to do. It struck me that the reason I couldn’t speak to my mother and aunt is exactly the reason I had to have the surgery.

Undergoing a prophylactic double mastectomy was a great decision for me. It’s clearly not a choice every woman would make, but I’m convinced without it I would have been one of the estimated 226,000 women the American Cancer Society says is diagnosed with invasive breast cancer every year.

I could have tried to eat my way to a cancer-free life, but even Dr. T. Colin Campbell, author of the popular vegetables-are-key-to-health book “The China Study” admits diet may not be enough to protect BRCA patients from cancer.

Gilbert and her husband, Mark, at a basketball game.

“We need more research,” Campbell told me. “Conservatively, I’d say go ahead and have the surgery, and eat a plant-based diet after.”

I also could have waited for a vaccine, a pill or some other medical advance to come my way that would have made such a radical decision avoidable.

Perhaps MD Anderson Cancer Center’s newly announced war on cancer will produce positive results for patients who are susceptible to triple negative breast cancer, the type of aggressive disease likely to afflict BRCA1 patients and the kind my aunt most likely died from.

Gilbert's children, Jake and Lexi, in Tikal, Guatemala -- the last family vacation before Gilbert's surgery.

But every surgery substitute seemed locked in hope, not statistics. And as I’ve told my husband and children, I wasn’t willing to wait. I love them more than my chest.

My preventive mastectomy: Staying alive for my kids

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