By Guest Blogger Leah Mitelman
On October 16, 2006 I had a double mastectomy and breast reconstruction, by choice. The story began several years earlier, when I was 26 yrs old, and my mother was diagnosed with breast cancer.
I guess this shouldn’t have been too surprising since both my grandmothers had survived their own bouts with breast cancer. My mother had a lumpectomy and underwent several months of radiation and chemotherapy. The whole situation is really somewhat of a blur now. I was living in a different city than my mom, working at my first “real” job and newly dating my husband.
At the time, I wasn’t worried about myself or my own chances of getting breast cancer. After all, my mother and grandmothers were all post-menopausal when they were diagnosed, which usually indicates that the cancer is not hereditary. I had had a bit a “scare” the previous year when I found a lump myself in my own breast. But it turned out to be nothing and I was told not to worry. A few months after my mother’s diagnosis, I had found another lump in my other breast. But same story as before… I was told that I had nothing to be concerned about.
Fast forward a few years. I had just given birth to a beautiful bouncing baby boy. I was home visiting my parents in New York with my newborn son, when my parents told me they needed to discuss something with me. This instantly set off a feeling of panic, because whenever they had ever needed to “discuss” something with me, even when we were growing up, it was never good. She then told me that she had tested positive for the BRCA1 gene, or breast cancer gene.
The breast cancer GENE. I was shocked and at the same time confused. I knew her oncologist had advised her NOT to be tested, as it was unlikely she had had the hereditary type of cancer. It turns out that my mother’s sister had first decided to get tested on her own and found out that she was a carrier of the breast cancer gene. My mother told me, that once she found out about her own sister, she and my grandmother decided they needed to get tested too, to which they discovered they were also carriers. My mother explained to me that this meant that I had a 50 percent chance of inheriting the same breast cancer gene.
My mother quietly told me that this had all been going on during my pregnancy, but that she had decided to wait until I gave birth to tell me what was going on. But now I was faced with a decision, and I had to make a choice. Talk about being on the fence.
Sitting in my parent’s apartment in New York permanently exhausted from caring for a colicky infant, my mom told me I should be tested. I had no idea how to digest this news or what it meant for me or my family, but I agreed to have the blood test. Truthfully, I don’t remember feeling particularly stressed or frightened at the time. I was perhaps naively consumed with being a new mom, and I had little time nor energy to focus on anything else. About a month later I took a simple blood test and answered what seemed like a million questions required by a university study that would allow me to be tested for free.
When I got the phone call a few weeks later that I had tested positive for the BRCA1 gene, I was sitting on my bed breast-feeding my son. I was not at all surprised. I pretty much expected that to be the result. The geneticist explained to me that I needed a mammogram immediately, and would also need to be checked every 6 months. She also told me that some BRCA1 positive women are advised to get mastectomies. She also told me I would need to strongly consider having my ovaries removed by my 40th birthday since I was at a much higher risk for ovarian cancer, a disease that is sadly rarely detected before it’s too late.
I remember hanging up the phone and immediately dismissing the idea of having a mastectomy. That seemed way too extreme even though I knew my aunt had opted to go that route. I figured I’d be extra-vigilant about being checked and go about my life.
I honestly can’t tell you I dwelled on it much more, until my son was about 6 months old. I found another lump in my breast. This time I was scared. And there was a lot more to lose. I was a wife and a mother now. The lump turned out to be another benign tumor, but I had had enough.
I sat in my doctors office, one of the most respected breast surgeons in New York and the woman I credit with saving my mother’s life and said, “I can’t do this anymore.” I felt like I was waiting for the other shoe to drop. I finally realized that I had been suppressing feelings of terror that I was going to die and leave my child motherless and the floodgates opened. My doctor looked me in the eye and said, “Say the word and they’re in a jar in the lab.” It took me a moment to realize she was talking about my breasts.
She told me that WHEN I was diagnosed with breast cancer she would do everything in her power to save my life BUT she couldn’t guarantee they would find it in time. She told me that given that my risk of developing breast cancer was between 80 and 90 percent, she was pretty confident that if I lived long enough, I would develop the disease at some point. She also told me that breast cancer in younger women was more aggressive.
I left her office with a lot to digest. I felt that prophylactic mastectomy was probably the right choice for me, medically and psychologically, but I didn’t know how to tell my husband, a self-professed “boob man.” I figured he’d think it was nuts and try to talk me out of it.
I was surprised to find him so completely supportive and in favor of the surgery. I agonized over my decision. I even waited a couple of years (had another baby in between) but in the end, I felt that it was the best choice for me and for my family. I chose to take my health into my own hands. I chose to not live in fear every minute of every day, and then for every next doctor’s appointment. I chose to try to be around for my family for as long as I could. I realized that I couldn’t control everything in life but this was something I could. Oh, and I even got to choose my own breast size, although probably a bit smaller than my dear husband would have picked!
I’m a very private person, so sharing my story for the world to hear has not easy for me. My goal in telling my story today is simple: if it helps even one person realize that knowledge is power, than it was all worth it. We need to understand that the more we know about our health, the more choices we have. I know too many women with family histories like mine that won’t get tested because they don’t want to know the results. I relate to the fear. But for me, the fear of the unknown was far worse.
Peace and good health,
On May 27th, 2010 the Weekend to End Women’s Cancers is organizing a National Wear It Pink Day, which is basically a celebration of their commitment in the battle to end women’s cancers. They’re encouraging everyone to embrace their inner pink-ness and show their support by wearing any shade of pink. www.EndCancer.ca