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September 23, 2010

Diary of My Preventative Double Mastectomy

At the age her mother was diagnosed with breast cancer, Teresa Lewis made a drastic decision to avoid the same fate.

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Teresa Lewis at home in Tampa, Florida

Photo Credit: Susanna Howe

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In 1992, I was 21 and six weeks away from graduation at Cornell University when my mother found a lump in her breast and was diagnosed with stage-four breast cancer. She was 39 and had never had a mammogram, but the cancer was so aggressive that doctors performed a double mastectomy within two weeks of her first appointment. After rounds of radiation and chemotherapy, she managed to sum up the superhuman strength only mothers possess to see me get my diploma. But there was no time for celebration. As soon as I had packed up my dorm room and moved back to our fourth-floor walk-up apartment in Brooklyn, my three sisters and I went into crisis mode. The eldest, Gloria, was living in Albany, New York, and we agreed our mother could receive more personalized care there than in one of the overcrowded New York City hospitals. We made the decision to move upstate less than two weeks later.

After all, it was up to my sisters and me to help her fight through this. My mother was an only child, so we had no uncles or aunts as a fallback support system. She had divorced my dad when I was young, and my relationship with him, which had always been strained, ended soon after I moved to Albany. We lived in Gloria's apartment, and Gloria and I did the best co-parenting we could for our younger sisters, who were 16 and 18, whom we enrolled in local schools that fall.

I was responsible for shuttling our mother to her chemotherapy and radiation appointments during the day. I'd change her bandages while she healed from the mastectomy—she didn't get implants—and cleaned her up after she retched from the chemotherapy treatments that often left her nauseous. At night, I worked at downtown Albany's Marriott hotel as an auditor. My mom's rapid decline was unbearable to watch—there was hardly a trace of the vibrant Puerto Rican woman she once was. The cancer quickly spread to her brain, and seven months after her diagnosis, she died.

While my sisters and I had experienced this tragedy together, we processed it in profoundly different ways. We were all so mad at the world after she died, and instead of coming together to grapple with our loss, we grew apart. The following year, I moved back to New York City for a job as the front-office supervisor at a hotel, and the relationships I had with my sisters, once the strongest bonds I had ever known, dissolved. I was utterly alone and inconsolable as I entered my first real years of adulthood. Not only had I lost my mother, but in losing her—the rock of our household—I lost my family, too. Even today, Gloria is the only sister with whom I've reconciled.

On my own in New York City, I reconnected with friends and did what most 20-somethings do: hung out in dive bars and fretted over boys. And I started worrying—a lot—about getting breast cancer. All my life, I had chosen minimizer bras or sports bras to downplay my ample cleavage and the unwanted attention it attracted from guys, but after my mother's death, I became even more critical of my busty, D-cup chest, equating it with death. I started to compulsively perform self-examinations in the shower, constantly checking for abnormalities.

Nine years passed before I found a lump. It was 2000 and I was 30, on a 14-day cruise through the Panama Canal with my husband, whom I'd married a year before. As I guided his hand to my chest, I knew he felt it, too. We both panicked, but we still had 11 more agonizing days at sea. Back on land, doctors discovered it was a fluid-filled cyst that they drained to biopsy. The results were negative for malignancies. In 2003, I discovered another lump in my left breast—this time, a tumor. A doctor surgically removed the mass that tests confirmed was also benign. Not cancer, they kept telling me. But my panic was pervasive. How could they be sure they got everything out?

Life went on. We moved out of the city to a New York suburb, and had two children, Evan and Eliana. Then, in November 2008, a cloudy, opaque mass appeared on my annual mammogram. Three hours, two mammograms, and an ultrasound later, my doctors still couldn't get a good look at the pebble-size speck. Fear froze me: Was I destined to meet my mother's fate? After an MRI, they told me it was just a cyst, not even problematic enough to remove. Naturally, I wanted a second opinion. My breast surgeon, who had removed my tumor five years before, reviewed the results and agreed the lump didn't look remotely cancerous.

Sensing my mounting anxiety, she broached the subject of the BRCA gene test—it would indicate the likelihood of my developing breast cancer—in hopes that the results would allay my fears. But I'd already made up my mind. "I'll do the test," I told her. "But whether it's positive or negative, I want them both gone by my 39th birthday"—the same age at which my mother was diagnosed. She cautioned me to do some research on a bilateral prophylactic mastectomy—preventive surgery to remove my breast tissue. But she agreed that I was a good candidate. My mother had died so young, and my maternal grandmother had had ovarian cancer, often a precursor to breast cancer.

Despite my conviction and my surgeon's support, I knew that removing my breasts to eliminate the risk of cancer was still a radically invasive move and one without clear benefits. Research has shown that women who remove completely healthy breasts still have a 10 percent chance of getting breast cancer. (It's impossible to remove all of the breast tissue.) And since I tested negative for the breast cancer gene four months after the meeting with my surgeon, my decision put me in a very rare class. I was entering largely unchartered territory, and the Web was short on support sites.

But that didn't stop me. When I'd had my previous scares, it had just been my husband and me. Now my life was different—Evan was 4 and we had just celebrated Eliana's first birthday. I had seen breast cancer tear my family apart, and I wasn't going to let it happen again, even if that meant agreeing to a major surgery that carried its own risks for complications. Even though it was more than 15 years ago, the seven months I'd spent watching my mother lose the fight of her life continued to haunt me. I never wanted my kids to have to take care of me the way I had to take care of my own mother, both of us too young to handle it.

While my husband's support was unwavering, my family and friends questioned my decision. "Why would you cut off your tits?" a friend asked, insinuating I had lost my mind. My sister Gloria was shocked but understanding, and for the most part, she remained reticent on the matter. I can only imagine the long-buried emotions my choice had reawakened in her own life. My decision wasn't for any of them, though. I hoped it would bring me a sense of peace—no matter what happened, I wanted to know I had done everything I could to shield my children from ever having to experience what I had.

I scheduled the surgery for the first available slot, four months away, and met with a plastic surgeon to choose the size of my implants—a small B cup. I went in for the five-hour procedure in late July 2009. As I was wheeled into the operating room, a momentary wave of panic swept over me. What if I never wake up from the anesthesia, I wondered. What if this elaborate plan to cheat cancer kills me anyway? But the last thoughts I had as I went under were of my mother—this surgery would be one of the few times I could literally feel what she had experienced. When I woke up in the recovery room, my chest felt like a tractor-trailer had rolled over me. After a week of recuperating in the hospital, I was discharged, but my upper body was shot—they had taken out lymph nodes to biopsy for cancerous cells (the results were negative)—and I could barely lift my arms.

Before stitching me back up, the plastic surgeon had inserted expanders between my chest muscles that were periodically filled with saline to slowly stretch my skin in preparation for the real implants. The expanders were painful and felt like steel plates that made my chest heavy and tight. They were filled four times over 10 months. During expansion, I embraced my concave chest; I even wore tank tops. I wasn't posing in front of the mirror or pretending to be sexy, but for the first time I felt at peace with my body. Still, I went through with the implants because I remembered how hard it was to see the scars on my mother's bare chest, and I didn't want my children to witness that either. Real or fake, breasts would always be a sad reminder of my mother, which is why I didn't embrace larger implants. But I'm relieved that I finally put to rest the fears that plagued me for nearly half my life.

One of the hardest parts of the reconstruction phase was my inability to pick up my 1-year-old daughter—for weeks after the lymph node removal, my arms were too weak to hold her. While she couldn't possibly comprehend what I had done, I know I'll have to weather another storm of emotion when she develops breasts of her own. I don't want her to inherit the fear that drove me to make this decision, but I will make sure she gets mammograms from an early age and never slacks on self-examinations. Knowing I'd had the surgery for her and for her brother, I never had one of those "What the hell did I do?" moments of regret. Still haven't. After all, it was my choice. A choice, I am well aware, that most women who do have breast cancer never get to make.


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