Body I Did It! Readers Stories of Personal Triumph

I Did It! I Had a Preventative Double Masectomy

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by Krystin Tate

krystin tateI sat in a gray, windowless space, a room typically used to observe children with disabilities. It doubled as the setting of something life changing – receiving test results I wasn’t sure I wanted. But it was too late to run as the genetic counselor handed me a purple folder, a medical Pandora’s box. “The results are positive,” she said, confirming my worst fears.

What she didn’t say, but I knew with a sinking feeling, was that the positive results indicated that my risk of breast cancer was as high as 87%. Barely less than a sure thing.

Think about it this way: if you were boarding a plane with an 87% chance of crashing, would you pray for that 13% chance of safety or high-tail it out of there? It sounds easy, right? But what if it wasn’t a plane crash you feared? That’s what I had to ask myself when I tested for the BRCA2 mutation. Everyone carries the BRCA gene, which works as a tumor suppressor, but when it is mutated it greatly increases the risk for breast and ovarian cancer.

Because I’d already known I had a 50/50 chance of inheriting the mutation from my mother, I’d spent time researching. There are few options for those who test positive: chemoprevention (which can impact fertility and increase the risk of other cancers), increased surveillance including mammograms and MRIs, or preventative surgery.

I tend toward the anxious side of the spectrum and didn’t relish the thought of waiting for cancer in hopes of catching it early. I couldn’t handle waiting and watching, always wondering if cancer was around the corner. At the same time, did I want to irreversibly alter my body? Most signs pointed me in that direction. After all, I was young and healthy, and I had incredibly comprehensive health insurance. I lacked the responsibility of children to care for and could easily miss work.But yet, I had just begun dating someone new – would he stick around? What if it didn’t work out – would anyone love a woman who was no longer whole?

It felt like an impossible decision, but my predisposition to worry and my aversion to risk meant that surgery was ultimately the only choice for me.

Therefore, when I learned I was positive, my first thought wasn’t that I would die of cancer. It was that I’d be disfigured, forever stuck in a body that didn’t resemble me. I’d made the mistake of viewing post-mastectomy photos online and convinced myself my results would be identical – even though the photos depicted elderly women who had undergone radiation. I spent the next month and a half in a self-pity spiral. How, I wondered, could women say their knowledge of BRCA was a blessing? I wasn’t blessed, I was devastated.

On the day of my surgery I was nervous but ready. Being put under was surprisingly easy. I woke up hearing that I was done but that no reconstruction had happened. I was breastless. I immediately started crying and, afraid to lift my arms, I let the anesthesiologist wipe the tears from my cheeks.

After one night in the hospital I spent the next few weeks dealing with complications. The doctor forewent reconstruction because my blood flow was poor; this caused skin necrosis which caused two seromas. When it became clear that my skin wasn’t going to heal itself, I underwent a debridement, leaving me with wounds to care for on my own. The skin scarred and tethered, making reconstruction with implants dubious at best.

At times, I wished I had waited longer for surgery, at least until a time when I had accepted the possibility of being without reconstruction. Sometimes I even wished I hadn’t tested to begin with. My fear of deformity seemed to be coming true and I was afraid I would never feel normal again.

For the illusion of normalcy and for a modicum of self-confidence, I wore post-mastectomy camisoles with pillow-like “breasts” to fill out my shirts. In January, I went to Nordstrom to be fitted for real prostheses. I sought a second opinion and found a new plastic surgery office, although they confirmed implants alone wouldn’t be possible with my skin.

A few days before I was to have my breasts reconstructed with my latissumus dorsi muscle, my new surgeon suggested a different route – revising the scars and grafting fat from my abdomen to my chest to increase the tissue base. Six weeks later (eight months after my initial mastectomy), I had tissue expanders inserted and had them slowly filled to expand the skin.

My body doesn’t look like it used to; it looks pretty good, but reconstruction is just that – a redoing of the original. I have a newfound respect for myself after spending eight months with absentee breasts. I thought at first that I wouldn’t be able to leave the house. I’m not vain, but the idea of looking “abnormal” was terrifying. But soon my prostheses were just another article to put on in the morning. When I started going to the gym flat-chested, I realized people don’t pay as much attention as I expected and it was more important that I was using my body to be healthy and fit. I’ve realized, too, that natural breasts or no, every woman is deserving of love and support.

Although my body was different, I was still me – still sarcastic, still loud, still fun – and stronger than I’d thought. Although I have one more surgery (I swap the expanders for implants in November), the feeling of being intact again, if imperfect, is amazing.  So is knowing that my 87% chance of breast cancer is now less than 5%. Even though it was a bumpy ride, I’m glad I took my health into my own hands. I’m glad I didn’t get on that crashing plane.

Krystin is a twentysomething living in Seattle, spending her days working in an office and her nights reading good books and watching terrible television. She has recently started taking a boxing class and loves wearing pink gloves and punching things.

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