“When will I get breast cancer?” I’ve been asking that question my whole life. It was never “if,” always “when.” My mother died of breast cancer in her mid-30s; I was 3 and my sister was 5. A black and white photograph of my mother is in a prominent spot on my mantelpiece along with dozens of family pictures. She is always with me.
At 37, after having my two beautiful boys, a good friend challenged my sister and me, asking, “Why the hell haven’t you been tested for the BRCA gene yet?”
She had a point. I had avoided knowing the definitive truth, but I was finally ready to know.
My sister and I approached getting tested as a dance with intricate steps we both needed to follow. I, the younger, brasher Type A sister, would get tested first, and my sister would wait.
When my results came back positive, my sister was sitting next to me, intense and alert. I had expected to be positive, but she was stunned, and quietly panicked. There was no way around it; she had to get tested too. When her results came back negative, my insides dissolved in both relief and trepidation. I now knew I carry my mother’s genes alone, and I was determined to walk a different, difficult journey.
The BRCA test revealed I had a 70% chance of getting breast cancer and a 25% chance of ovarian cancer. Options were either regular mammograms and MRIs and waiting (praying each time to be in that lucky 30%) or aggressive surgical action. I wanted be aggressive, but that still left so many different treatment options. As I grappled with what was happening, I learned as much as I could. I asked friends about their choices, joined a Facebook group and absorbed their collective experiences, found a doctor’s office that specialized in these issues, and yet I repeatedly faced the frustrating fact that everyone is different. What worked for other women wouldn’t necessarily work for me.
The first medical step was a breast MRI, to make sure I was breast cancer free. As I lay there stiffly to avoid blurring the image, the weight of undetected cancer descended upon me. The next day, my eyes burned and a heavy dread settled into my shoulders when my doctor called to say she wanted to biopsy a few small areas. “What ifs” invaded my thoughts while I waited, tortured, for the results. I would cry at random moments if I sat thinking for too long. It was like we hit the pause button on life—our universe had inhaled and was holding its breath. We made no vacation or long term plans. We just waited.
And then, we exhaled. The biopsy was negative. Time to take action and move ahead. My friends and family rallied around me with support as decisions were made. I decided to have my ovaries and fallopian tubes removed, and a double mastectomy with Deep Inferior Epigastric Perforators (DIEP) reconstruction. Basically, I chose to take all of the belly fat I gained from pregnancy and doughnuts, and use it to build brand new breasts—while removing easy targets for cancer, of course.
Surgery #1 took six hours to remove my ovaries and Fallopian tubes, putting me in surgically induced menopause. I also had breast augmentation surgery to prepare for Surgery 2. I was home the same day and had three weeks of recovery. Luckily, hot flashes were few and far between and my only menopausal side effect was a sweet tooth. This I could live with!
Two months later it was time for Surgery #2, the main event. The double mastectomy with DIEP reconstruction was a 14 hour procedure requiring five days in the ICU and six weeks of recovery at home. Often with DIEP there is a Phase 2, when the surgeon fixes any problems and makes everything look good. Surgery #3 was to finalize the shape the breasts, and correct imperfections with liposuction (not as glamorous as you think). I am grateful I chose to do the third surgery. I am now four weeks out and I like what I see in the mirror.
Throughout these events, my boys seemed fine on the surface. But each had inner turmoil. My 3-year-old told his teachers, “Mommy not so good.” My 6-year-old would overflow with frustration more frequently, act out erratically, and try to release pent-up agitation. They felt my stress, and were equally going through what I was emotionally, even if they didn’t fully understand what was happening.
My husband, the love of my life, struggled, suffered, and yet somehow sustained our family. Since we started dating, my husband’s biggest fear was losing me, like we lost my mom. It was unthinkable for him to have to raise our kids by himself, especially if we had a choice. After my biopsy results came in, we immediately agreed: We were going to take charge of our—long and happy—future.
He was with me for every doctor appointment and all planning. He made sure I was ready for every surgery, pampered me, slept at the hospital, and took care of the kids. He managed to keep life as normal as possible through my absence. We were frayed at the ends, but our already strong relationship strengthened. I don’t know what I would have done if we hadn’t been so solid.
I also don’t know what I would have done without the blessings we take for granted. We are so lucky that medical breakthroughs allow us to KNOW our bodies. One out of every 40 people of Eastern European (Ashkenazi) Jewish ancestry carries a BRCA1 or BRCA2 gene mutation. This is 10 times the rate of the general population. These mutations substantially increase one’s risk for breast and ovarian cancer, and slightly increase the risk for other types of cancer. Every Jewish woman should get tested. Your decisions may be different. Your journey may be different, but don’t lose the opportunity to shape your own future.
Less than a year ago, I found out I was BRCA positive. Today I’m done with surgery and ready to live my life without fear of breast or ovarian cancer. Next to my mother’s picture on the mantelpiece are photos from our wedding, vacations, and beautiful afternoons in the park. I’m grateful, and I’m excited, to fill more frames with many more years of memories to come.