My Story as a Previvor: A BRCA2 Diagnosis
By Kristina Smith
Jan. 30, 2020 — My genetic test came back positive for BRCA2. A genetic mutation. The doctor explained how BRCA was the breast cancer gene and that they were tumor-suppressing proteins. Mine, however, were mutated, and may not do their job. He continued, calmly and slowly, with the next steps, the referrals he was making to oncology, geneticist, surgeons, and the list continued.
I could feel the leather of my black flats melting in with my feet as they became one with my body. I suddenly felt nude and vulnerable sitting in my doctor’s office. Suddenly, my millennial invincibility came crashing down as I sat with the doctor, alone in an exam room. My feet were cold and clammy. My heart was beating, but my breath stopped. The black hole that I had heard other people experience swallowed me like Jonah and the whale. The ocean of emotion was black and unforgiving.
This positive test meant I wasn’t just more susceptible to breast and ovarian cancer, but a slew of other cancers. I was a hostage in a situation where I was the captor and the victim. I had at least a 69% chance of breast cancer in my lifetime.
The doctor explained that I was a candidate for an oophorectomy, and once that was done, I would have some time before getting a prophylactic mastectomy. My family flashed into my fogged mind. My grandmother was diagnosed with ovarian cancer at 40 and died just about a year later from cruel cancer. Her grandmother (my great-great-grandmother) died of cancer. This was part of my family’s story. Now, was it my turn? However, I have choices that they didn’t have.
Visiting an oncologist during the pre-pandemic
March 17, 2020 — As the world, specifically the U.S., was acknowledging that we were about to see a pandemic envelop our lives and strip away any sense of normalcy, I was sitting in an oncologist’s office getting my blood drawn. My husband was with me as we sat in the waiting room filled with women that were undergoing cancer treatment or recovering from surgery. My mind raced. Could that be me?
The doctor’s discussion was a haze filled with their recommendations, referrals, second opinion recommendations, and pandemic themes. The biggest take-away — get an oophorectomy now. Remove my ovaries and fallopian tubes, which would ultimately fling me, at 36, during a pandemic, into menopause. Unlike my grandmother and great grandmother, I was in a position to be proactive. To take this course of action of preventative care.
I spent time in and out of radiology for a mammogram, follow-up ultrasounds, an MRI, surgical consults, and many blood tests. All were required before I scheduled the surgery date. Once I was ready to schedule the surgery, we were in a pandemic phase where elective surgeries were restricted. This meant that I and countless other people who were needing life-saving preventative surgeries were delayed. The waiting was all-consuming. The darkness of the delay mixed with remote work, distance learning for my kid, and the uncertainty of the world had me appreciating the small things around me.
Being able to stay home. Having food in the pantry. Having a job. Having a job that has benefits. This was a humbling time; my humanity was loose on my sleeve. A lesson filled with moments of mourning for my body and future, while also filled with the hope that preventative medicine can bring. People around the world were dying, and I was in a position to help myself, and it felt simultaneously empowering although filled with privilege.
Over time, I started to reach out for support and told family, friends, and colleagues. My decision to get this preventative surgery was mine. I did it so I could live long enough to be with my son as he grew up. I want to serve the community and tell other previvors (mix of preventative + survivors) my story because the stories of others helped me see I wasn’t an anomaly.
I was wheeled out of surgery on the morning of June 29, 2020. It took about a month for hot flashes, insomnia, and fatigue to arrive post-op. While I’m opting out of hormones for now in favor of a lifestyle change, I know there will come a time when that will be the course of action. I am working through this new phase of life through the support of friends and family, therapy, food, and exercise.
My prophylactic mastectomy is scheduled for early 2021. That decision was also mine. It’s preventative, while also, again, empowering and filled with privilege. I hope one day I have the honor of sharing my mastectomy story with someone that needs to hear they aren’t alone, and that they are, more importantly, enough.
These surgeries don’t define my femininity or the love I have for myself. Rather they are the truest example of the love I have for myself and the hope I have for the future.
Kristina Smith lives in Canton with her husband and son. She is a Canton Alderwoman and works at Biltmore Estates.