Cancer-free but at risk, one previvor felt guilty for receiving medical attention.
I WAS CANCER-FREE, and I felt like a fraud. I was in the waiting room at Memorial Sloan Kettering Cancer Center, waiting for one of my biannual screenings.
I had recently learned that I had the BRCA1 genetic mutation, which my doctors said gave me an 87 percent risk of developing breast cancer. My father’s parents and both of his sisters had already died of cancer. I was sure that my parents — or maybe I — would be next. But I didn’t actually have cancer, and for that I was deeply grateful. I was also kind of embarrassed.
“She is so young — what a shame,” I imagined the real patients with cancer thinking. I didn’t want to join that cancer club, but I was also terrified that someone would find me out and scoff at me for wasting time that doctors could be spending on people who were fighting for their lives.
I knew how devastating cancer treatment could be, and I couldn’t calm my nerves. I worried about undergoing preventive surgery and about getting the disease, at the same time questioning my right to even have those concerns.
Between the diagnosis, intimidating waiting rooms and my self-consciousness about being a cancer impostor, I spent the next three years running from my fears. I tried to party and drink those worries away. I was in my early 20s and found plenty of distractions in New York City.
It wasn’t until I confessed my flakiness to my father that I realized I was being foolish. He certainly wasn’t pressuring me to have surgery, but he wanted me to be informed — or at least show up to my doctor’s appointments.
I sobered up. I started going to my appointments and spoke with a genetic counselor. I worked through all my options, and it turned out that I was a great candidate for a preventive double mastectomy. I hoped that the surgery would alleviate both my risk of breast cancer and my obsessions over it.
At 28 years old, I had a successful double mastectomy. I was healthy and healed quickly. But throughout the process, I felt alone and scared and, most surprisingly, guilty. At the same time, my friend was going through cancer treatment at 33, and when we met for brunch, I was so nervous, I spilled my latte all over her lap. She was shocked that I felt so nervous and was more empathetic and kind than I felt I deserved. After we ordered fresh lattes and lots of napkins, my perspective began to shift.
I started to share my story, hoping my experience would help another girl who might be just as uncomfortable. I created the docu-series “Screw You Cancer” and a comedic memoir, “Dangerous Boobies: Breaking Up With My Time- Bomb Breasts.” I wanted to start a conversation. Even if it ended up being between me and one other person, maybe we could use our experiences to heal each other. I wished I’d had a book like “Dangerous Boobies” at the time of my diagnosis and surgery. Still, in writing it, I was very sensitive to make sure I wouldn’t offend cancer survivors, the people I admired most.
To my absolute surprise, I was welcomed with open arms by patients with cancer and hospital staff who understood that my situation was different but still important. After my book came out, I was interviewed by NPR’s San Francisco station, KQED (tinyurl.com/ybqevjq8). Women called in, a mix of survivors and previvors, each finding something relevant and valuable in the discussion. We overlapped in a unique way. We discussed nipple reconstruction, sex after surgery and how to explain to your impatient boss why you need to take a nap at lunch. Our experiences were put to use, and it felt empowering that, after everything we had been through, we were able to use that information to help someone else.
During this journey, I’ve spoken to survivors who support preventive measures because of their experiences with cancer. I’ve spoken to previvors in both deliberation and recovery. None are identical, but we all have a lot in common. We’re able to compare mastectomy notes, what silicone tape helped our scars heal and how constipated we were after surgery. It’s all important information! Our differences don’t prevent us from being uniquely bonded by what we’ve been through.
Here are perfect strangers offering support, whom I had been too afraid to even make eye contact with.
This incredible community opened up to me. I hope to repay them by treading lightly when discussing this topic, being sure to explain that I know my experience was not the same as actually being treated for cancer. But overcoming my fear of going public with my story has enabled me to connect with young women who are in the same position I was — and, hopefully, to help them.
It turns out we all want to help others feel less alone.