When I agreed to get tested for the BRCA1 gene mutation at age 22, I didn't completely understand what I was doing.
I knew my dad's family had a history of both breast and ovarian cancer, and my grandmother, great-grandmother and great-aunt had all died from these diseases. But when I learned I also had it, I was so overwhelmed that I couldn't process it. I'd just moved to NYC to pursue a career as a TV producer, and work was all I could think about.
Finally, about a year later, I saw an oncologist. What she said woke me up — she told me I had an 87 percent chance of developing breast cancer in my lifetime. She explained my options, which included intensive surveillance or a more extreme measure — a preventative double mastectomy. Nothing has ever scared me in my life. I'm a daredevil — I've spent my life sky diving, cliff jumping, and surfing — but for the first time ever, I was truly scared.
It felt like my body was no longer mine, and that it was inevitable that I would get cancer. I knew I needed to have that double mastectomy. My oncologist had explained it would reduce my risk of breast cancer to less than five percent, and I wanted to feel like a warrior not a worrier. I knew I wanted to be a "previvor," someone who prevents cancer or a survivor of a predisposition to cancer.
I took some time to make my final decision, but eventually I went back to my oncologist and scheduled my surgery. Those 90 days waiting for my operation were the longest days of my life. I'm a private person, so I didn't tell anyone except for my parents, sisters, and my boyfriend Justin.
When I looked online for resources and support for women like me, I came up pretty empty-handed. Everything was so scary and negative that I closed my computer. I felt completely isolated, like no one understood this decision I was making. So I filled up my time instead by exercising, joining a gym and lifting weights three times a week. I wanted to make sure I went under the knife in the best shape possible, to aid in my recovery.
The day of my surgery I was shaking so hard I could barely fill out all the paperwork in the waiting room. When the nurse told me to say goodbye to my family, I collapsed in Justin's arms bawling. But he whispered to me that I had this — I could do it. I was strong, and I was ready.
I walked toward the operation table looking up at all the lights, feeling like I was on the wrong side of a Grey's Anatomy episode. The anesthesiologist held my hand and told me everything was going to be okay, and then the next thing I knew, I was waking up. The surgery was over.
As the nurses wheeled me into the recovery room, I felt strong and beautiful. Then my mom handed me my phone and told me to check my Facebook. The night before my surgery, Justin asked me if he could post a photo of us together on Facebook with a caption telling people that I was having a preventative double mastectomy.
Justin is not social media savvy and rarely ever posts, so I was touched. I decided instead to post my own explanation before I went into surgery. When I got out, my page was exploding: there were about 1,000 likes and hundreds of comments, including some from strangers all over the world.
My physical recovery was easier than many other women's — probably because I was in such good shape — and I felt incredibly sexy even though my expanders were essentially flat. I wanted other women to know that they too could make this decision and still love their bodies.
Soon women from all around the world were reaching out to me, asking for guidance. I decided to start documenting my experience on Instagram, as a way of "journaling" my own feelings as well as serving as support and inspiration for others. I kept thinking about my then 13-year old sister, who hadn't yet been tested for the BRCA gene. I didn't want her to feel scared — I wanted her to see my pictures and feel strong and proud and beautiful.
Within a few weeks, I began developing a whole community of what I dubbed as my fellow "Breasties," women who, like me, had been affected by breast cancer. We were women from all over the world, but we had this instant connection because we'd all been through this very intense experience and it felt like we had been "breast friends" forever. I decided to hold a local event at a restaurant. I was scared—I'd never met Internet strangers before. Fifteen women showed up. At the end of the night, we had all become "Breasties."
Over the next year, I put together free events for the Breasties, such as workout classes and potluck dinners. But I knew I wanted to do more.
I teamed up with three other women — Bri, Leslie, and Allie — and we put together the first ever Breastie wellness retreat, where we took 20 Breasties (ten survivors and ten previvors) to the Poconos for a ski weekend. We got to the top of the mountain and took our tops off together, raising our arms while looking out over the mountains before putting them back on and skiing and snowboarding back down.
The retreat made me realize that I needed to take the Breasties to the next level, so I quit my TV job to focus on establishing the Breasties as a national non-profit. Within a few years, I hope to have headquarters in several major cities, host regular retreats for women affected by cancer, and help women from all around the world know that they too can face their mountains. I never, ever want another woman to feel as alone as I felt.
My own journey was hard, but I view it as the rebirth of myself. We're conditioned to believe that breasts make you feel beautiful and feminine, but that's not the case. I had breast reconstruction about nine months after my double mastectomy, but they're not what make me sexy. I wake up each morning no longer terrified that I am going to die of breast cancer.
There's nothing sexier than saving your own life.
Written by Paige More
LIVESTRONG'S Chronicles of Courage series has partnered with Athleta for Breast Cancer Awareness month to profile and share the stories of five women's experiences. For every bra purchased, Athleta will donate an Empower bra to UCSF HDFCC. Valid Oct 2-15. Maximum donation of 2,500 bras.