Growing up in my family, breast cancer was always the huge pink ribbon in the room. I was born exactly nine months after my aunt Iris, my dad’s little sister, died at age 33. I was lovingly and terrifyingly welcomed into the world as her reincarnation. By the time my dad learned about a genetic test to help determine cancer risk, both of his parents and his other sister had also died. He really, really, really wanted me to get the test. I was not into it. My life was finally getting good. I had just graduated college. I fell asleep eating pizza in bed and woke to the sounds of New York City outside my miniscule apartment window. I was a free woman, and cancer was not in the equation.
Finally, at age 25, I relented — mostly because I wanted to quit my boring day job to pursue acting full time, and I figured I should get the test while I still had health insurance. Unfortunately, I did it in the worst way possible. I should have researched genetic counsellors and seen one who specialises in testing and the impact that has on your psyche, emotions, and future. Instead I did the express-lane version, and made an appointment with my general practitioner, the one who treated me for bladder infections and gave me flu shots. Bad idea.
The test was for a mutation of the BRCA gene, which helps stop cancer from developing. We all have the BRCA gene but if you have the mutation, your body has a harder time stopping a cell from being cancerous or suppressing an already cancerous cell from growing bigger. It’s not a virus or sickness you get over time, it is something you have as soon as you are born, like a full head of hair, blue eyes, and a penchant for giggling during all serious events (like this girl!). Ashkenazi Jewish families have the highest rate of BRCA mutations: 1 out of 40 people. For everyone else, mutations are more rare (2-3 per 1,000), which is why everyone does not currently get BRCA testing.
Before I could finish telling the doctor my family history, she had ordered the blood test. I was of Ashkenazi descent, and my father had tested positive; I was a great candidate.
So I gave her my blood, almost passed out like I always do when I give blood, and rode the subway home alone. I treated myself to a strawberry Pop-Tart, and proudly called my family to tell them I finally did it. I took the test. Now we can all move on.
Except, not quite.
A week later a woman from the doctor’s office called and told me I needed to come back to go over my results with a surgeon from the hospital. It was routine, the woman on the phone assured me. The new doctor I’d be meeting with handled all breast-related cases, and this was just precautionary. Still, I wasn’t amped.
I don’t want to seem dramatic or too emotional but for efficacy let’s just call that doctor Dr. Awful for the remainder of the story, shall we? So I went to the hospital and Dr. Awful came into the exam room like she was opening the New York Stock Exchange trading floor. She proceeded to tell me everything she would recommend we do if I was positive for the BRCA mutation: “First thing, we would cut off your breasts.”
First thing? That’s the very first thing? Why not ask me any questions: Am I pregnant? Do I want to have this surgery? Have I sniffed glue? Do I think Justin Bieber and Selena Gomez are ever getting back together? Literally anything?
All Dr. Awful focused on was reciting her extensive mastectomy résumé. How great she was at surgery and how she performed them “all the time.” She had another office in Pennsylvania or in Connecticut, where she preferred to operate, but that was to be worked out later, I think. I can’t remember, I had emotionally blacked out at this point.
I had to keep repeating to myself, I don’t have cancer, I don’t have cancer.
Dr. Awful then left the room to go get the test results. I had a second to text my mom that I was in the doctor’s office and waiting to hear the results, and made sure to add “this doctr sux.”
I sat there alone, sweating through my skirt, thinking of my aunts and my grandparents who had died of cancer, trying not to cry. Dr. Awful swiftly reentered ready to rip off any Band-Aid in sight. She told me I was in fact BRCA1 positive. I was given a folder and told to book a follow up appointment for surgery with the receptionist outside. And then Dr. Awful walked the F out of the room and left me there, alone.
I could barely leave the exam room, but once I did, I just kept walking. I was in a fog. I thought of my future, my family, my funeral.
But wait! This wasn’t a cancer diagnosis; it was just a genetic mutation. Why did it feel like I was diagnosed with cancer? Cancer had stolen my loved ones and deprived me of Chanukah parties, sleepovers, and belly laughs. And now it was coming for me. It was right there tapping on my window.
I had recently gotten engaged, and instead of making doctors’ appointments, I got to work finding the best florist and made sure we had an ice cream sundae bar for dessert.
I had to keep repeating to myself, I don’t have cancer, I don’t have cancer. But it barely helped. I didn’t know what to do. All I knew was that there was no way in hell I was going back to that hospital. I was getting as far away from Dr. Awful as I could and I was never, ever going to get a double mastectomy. Cancer wasn’t a priority for me in that moment, but the size of my breasts was. (Did I mention that I was a size 32G? At 5-foot-2? Yes.) For my big day, I wanted an off-the-shoulder dress, and I needed my breasts to defy gravity. After much stress and expense, the dress fit, and the wedding was killer. But I was getting more and more tired of my breasts, too. They nearly ruined my wedding, and they were definitely upstaging me at every turn. Plus now they were threatening to kill me.
Still, it was a difficult decision. I was terrified of what my husband would say (even though he was wonderfully supportive). I talked about it with my therapist (even though she was bizarrely antagonistic). Lots of other weird stuff happened, which you can read about in my book.
Finally, after much, much, much research and even more contemplation and conversation with my family, I did have the surgery — and I’m glad I did. I don’t really miss my boobs, although sometimes I worry that my husband does. But my doctors told me I had reduced my risk of developing breast cancer from 87% to about 1%, and I reduced my anxiety by 99%. Under the Affordable Care Act, insurance companies are required to pay for both testing and genetic counselling for women who meet certain criteria, like I did. If you are at risk for the BRCA mutation, I encourage you to consider getting tested: Just make sure to go over the results with a genetic counsellor, and not some Dr. Awful with terrible bedside manner. It’s your life, your decision, your body — and there are lots of us out here if you need some help.
Caitlin Brodnick is an actress, comedian and author of Dangerous Boobies: Breaking Up With My Time-Bomb Breasts. October is National Breast Cancer Awareness Month. For more stories about detecting, treating, or living with breast cancer, click here.