An article from CNN.com written by Allison Gilbert
My preventive mastectomy: Alive for my kids
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.
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.
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.
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.
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.
"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.
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.