In my wildest imagination, I would have never thought the one thing I would have in common with Angelina Jolie is a double mastectomy. Her stunning announcement in the NY Times touched me to the bone, and I couldn’t be more thankful for what she’s done.
Angelina’s decision to go public shines a spotlight on facets of breast cancer that are otherwise drowned out by the well intended but ubiquitous pink ghetto of walk-a-thons and yogurt lids; genetic testing, young women with breast cancer and breast reconstruction.
Whether genetic testing is for you or not, it raises awareness that a strong family history means you should be considering a surveillance program at a breast center at a younger age. You can learn more about genetic testing and surveillance at Pink Lotus, where Angelina’s doctor posts about her treatment and my favorite site, Breastcancer.org.
What’s more important, while Angelina didn’t have breast cancer, my hope is that women everywhere will realize this isn’t just an older woman’s disease.
While only 7% of women under the age of 40 get diagnosed with breast cancer, women in this age group often have worse survival. They get diagnosed at later stages because the dense breast tissue not only makes it harder to detect tumors, but also because insurance often won’t cover mammography for women under the age of 40 unless there’s a strong family history. What’s more alarming is a recent study in JAMA which says the young women diagnosed with breast cancer that has already spread is on the rise at a rate of about 3.6% a year between 2000 to 2009.
Unfortunately, this is familiar territory for me. Nine years ago at the age of 36, I was diagnosed (or rather misdiagnosed twice, then diagnosed) with Stage 1 triple negative breast cancer. If you’re not familiar with breast cancer sub types, triple negative is not good news.
Looking mortality in the eye, there was no doubt a double mastectomy with immediate reconstruction was the choice for me. A chemo cocktail of Adriamycin, Cytoxan and Taxol was a non negotiable, and I said goodbye to my ovaries as extra measure. Unlike Angelina, I didn’t have the genetic testing done, but with a toddler to raise and a lot of runway left in life, I wasn’t going to waste anymore energy worrying about whether my body was going to betray me.
Survival was my outcome, but I was damned if I wasn’t going to find a silver lining somewhere in this mess. My breast surgeon, Dr. Eleni Tousimis met my aggression head on by recommending a skin sparring mastectomy with bi-lateral TRAM flap reconstruction, which means they would use what was left of my post partum belly fat and some abdominal muscle to create more natural looking and feeling breasts (I later had silicone implants put in because they were too small).
I stared at my plastic surgeon, Dr. Gregory LaTrenta and said. “I don’t see this as reconstruction, this is an upgrade”.
I had no choice but to be direct about what I was going thru with co-workers, clients, parents at my son’s nursery school, neighbors. The silk scarves wrapped around my head were a dead giveaway, but I found a new sense of purpose in sounding the alarm about young women, early detection and reconstruction options.
What was hard was getting used to my new body.
Once my hair grew back and the scars faded, no one would know I had been carved up and put back together again. Sometimes I even forget.
But underneath, there are moments when I feel damaged. Like when I hold my towel in a death grip over my breasts at the gym. Or those awkward exchanges about my medical history with a masseuse or new doctor who sees me semi-naked. And just try getting thru a professional spray tan where you are full frontal except for meager paper thong. I know these women see everything, but I wonder what they’re thinking and if they feel sorry for me. And when a man flirts with me, instead of smug satisfaction, the dialogue that runs thru my head is “yeah, if you only knew”.
What I miss the most is the sexual kung pao only my real breasts could provide.
Living with a double mastectomy is a much easier pill to swallow when its accidental ambassador is an icon of sexual vitality. Having Angelina as a short hand will make it easier for me to explain that I had what she had instead of, yeah I had this cancer thing, it was a drag and now I’ve got really fake boobs. My hope is this helps demystify the natural curiosity about reconstruction (“what do they look, can I see, can I touch”). And it makes me feel a whole lot less self conscious.
For all of the above, I thank Ms. Jolie for starting a fresh conversation about all of the above. Most of all, I think her for making me feel like I’m not alone.
Photo Credit: Getty