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The Resilience Gene


Breast cancer isn’t the only family trait I share with the women in my family

By: Amy Cohen

Amy CohenI have always been a fearful person. At 38, I wasn’t sure I was strong enough for a root canal, let alone being told I had the BRCA1 gene mutation, often called “the breast cancer gene.”

I’d gotten tested because the women in my family have had breast cancer: my mother, sister, aunts, grandmother. Anxious, I was constantly giving myself breast exams. I’d be out to dinner, considering the Tandoori chicken while feeling under my armpit for a telltale lump. So it made sense to take the test and know my chances of getting breast cancer once and for all.

The BRCA1 test is called “predictive,” because it predicts your chances of getting breast cancer within your lifetime, which is about 86 percent if you are BRCA-positive. But what I heard was, “You have breast cancer.”

I knew I had two options: I could continue with aggressive monitoring, or choose to remove my currently healthy breasts (called prophylactic mastectomy), which would significantly reduce my chances of getting breast cancer. The more I considered the surgery, the more I wondered, was I strong enough to handle losing both my breasts?

The Decision
My older sister Holly has always been the strong one, a trait she got from our mother. My mother was diagnosed in 1972, when many considered breast cancer a death sentence. She had two radical mastectomies that left her chest so gouged that in profile she looked like a fragile letter C. But she was also someone who always felt lucky to be alive and found joy in the smallest things. In the year Holly battled breast cancer, she never asked “Why me?” Instead, she whipped up butterscotch brownies for her oncologist. I joked, “I thought I could keep up with your exercise schedule when you were on chemo, but clearly I was wrong.” Both my mother and sister refused to let cancer stop them.

When I told Holly that I was thinking about getting the operation, she said, “Finally!” which was surprising since seven years before she got breast cancer, she’d had a prophylactic mastectomy. The procedure isn’t foolproof, and my sister was one of the 3 to 7 percent of women who got breast cancer anyway. So I was faced with the knowledge that the operation was no guarantee, but I was determined to reduce my chances. Telling myself I could always cancel if I didn’t think I could go through with it, I scheduled surgery to have my breasts removed.

My operation would be performed at Memorial Sloan Kettering in New York City, where patients are encouraged to attend a seminar on breast reconstruction. In that room, with all those women who had breast cancer, I felt lucky. I knew I had a choice many of them wish they’d had. At that moment, I decided I was absolutely going forward with my surgery. No turning back.

My options were implants or tram flap surgery, where fat is taken from the body and made into very natural looking breasts. My plastic surgeon said that unless I gained 50 pounds, I didn’t have enough fat for a tram flap. Afterwards, a woman wearing wacky Elton John-like eyeglasses came up to me and said, “Your plastic surgeon said you don’t have enough fat for tram flap surgery? That’s crazy! You’ve got plenty of fat! Plenty!” It didn’t help that I was eating a donut when she approached me.

This was the breezy story I told when explaining why I choose to have implants, in part because I think the truth of it all was so overwhelming.

The Surgery
The day of my surgery arrived and I was calm. In the operating room a nurse said, “You don’t look 40!” And I said, “Now I don’t need any anesthesia.” When I woke up in recovery, my exact words were “Is that it?” I thought I was going to be in agonizing pain, but I wasn’t. I was sore, but okay.

The next day it was time to inspect my new chest. Skin expanders had been placed under my chest wall and filled with a small amount of saline to make room for the implants I’d get later. In the end, would I look like Pamela Anderson or Anderson Cooper? It was a strange feeling to wonder if I would bond with my new breasts. I actually loved my old ones, which were perky A cups. I held my breath before slowly pulling apart my baby pink Velcro surgical bra. I was worried about what I would see. When I finally looked down I said, “That’s not traumatic! That’s what they looked like before!”

I started getting my chest expanders filled regularly. This is when I learned something extremely important about myself. I loved having bigger breasts! When my plastic surgeon asked me what size I ultimately wanted to be, I said, “Vulgar!” And he said, “Seriously, Amy.” And I said, “Seriously, this is the first time my postman remembered my name!” In fact, when I had surgery to have my permanent implants put in, I kept saying “As big as you can!” as I was being put to sleep. I wound up with a set of small Ds.

The Aftermath
Now, I talk to women who are considering a mastectomy (whether prophyllactically or because they have cancer) because I never want anyone to feel as afraid as I did. I’m happy to let them see my breasts and even grope them if it will make them feel more comfortable. As I often joke, I’ve gone to second base with women in bathrooms all over New York City.

What I never could have predicted is that I would think of my mastectomy as one of the best things that’s ever happened to me. Recently I decided to conquer my fear of heights on a horseback riding trip in Montana. As someone who gets nervous on a fifth-floor balcony, people were skeptical. While it wasn’t a complete success—riding along a steep, winding mountain trail on a horse that kept stumbling over rocks, I had a panic attack that made me sound as if I was doing Lamaze breathing exercises—before my surgery I never would have considered it, but now I feel I can conquer anything.

I think the most incredible thing I’ve realized is that in addition to sharing the BRCA1 gene mutation with my mother and sister, there’s another gene we share: the resilience gene. It tells you not to pity yourself and to deal with adversity in your own way, which for me meant saying, “It only took me 40 years to become a blonde with big boobs!” I watched my mother and sister battle breast cancer and learned so much. I’d underestimated myself, thinking I would crack. I never knew how strong I really was. My sister is now perfectly healthy, and while my mother won the battle with breast cancer, she lost a valiant fight against the brain tumor that ultimately took her life. I hope that resilience gene will define me and everything I do for the rest of my life. For that, I could not feel more fortunate.

 

 

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