“Two years ago, I stood alone in my apartment with an oncologist on the other end of the line, and I found out that I carried a BRCA1 gene mutation.
I knew what it meant to receive this news. My risk of breast and ovarian cancer were much higher than average due to this mutation. Specifically, I’d have an 87 percent chance of developing breast cancer in my lifetime, and a 53 to 57 percent chance of developing ovarian cancer.
My mother most likely had it too. She died of breast cancer, after a five year battle, in 2014 when I was 25 years old. Three years later at the age of 28, I was tested.
The BRCA gene is what’s known as a tumor suppressor gene. We all have them. Their role, when normal, is to tell cells to stop dividing. When abnormal, or mutated, they stop performing that critical task. Since cancer is a disease of uncontrolled cell growth, it basically constitutes a head start on cancer.
Based on my mother’s triple-negative diagnosis and family history, I’d known there was a good chance my test results would come out positive. I thought I was prepared. I wasn’t. Sinking to the floor, I melted in tears. I’d had a gut feeling that these were going to be the results — but after hearing them, things suddenly got real.
It’d be a lie to say that the phrase “knowledge is power” doesn’t get thrown out the door a little bit with the shock of finding out you have a 87 percent chance of developing breast cancer over the course of your lifetime. I’d done my research. The type A human being that I am felt prepared. I’d been telling myself I had the gene for the past three years. You can imagine the surprise I felt when suddenly that strong, brave girl who’d spent five years with her mom at chemo, radiation, hospitals, and hospice, couldn’t pick herself up off the floor.
I was confident and knowledgeable, yet in that moment my mind felt like a tornado. My emotions had taken over. They’d picked up my carefully researched files and thrown them straight into the ceiling fan.
It was December, so to begin with, a holiday season filled with entirely too many vices — alcohol, food, and tears. This time of year is already a hard one without my mother. Add on this the news of a life changing genetic mutation, and I was holding on by a thread.
It’s odd, to know that you’ve lived with this mutation your entire life. Then one day, you get the call to tell you that you’re considered high-risk for breast and ovarian cancer, and you’ll need to do surveillance for the rest of your life. Physically, you’re no different than the moment before they told you, and suddenly you’re emotionally a completely different person.
Over the next couple of months, I talked. I let every single thought I had spill from my head to anyone and everyone who would listen. Some days logical Mackenzie would show up, explaining my choice to have a preventative mastectomy that would lower my risk of breast cancer from 87 to only 2 percent. Other days I’d sob into a beer at the restaurant I previously worked at, while my friends comforted me in between taking orders.
As the smoke cleared, I started to see the silver lining I’d previously set up for myself: "Knowledge is power."
What was next for me?
This diagnosis meant I could take control of my health. It meant my insurance couldn’t deny me mammograms, MRIs, and ultrasounds due to my young age. It meant my preventative mastectomy would not only be approved, but also covered by my insurance.
I’d done my research and already made my mind up that a preventative mastectomy would be in my immediate future. I’d start the process to find the best medical team. I’d made the decision through my own research, that if I was a candidate, I’d move forward with a DIEP Flap (deep inferior epigastric perforators) reconstruction. This autologous tissue reconstruction would use my own abdominal tissue to create my new breasts. It would mean I’d have a chance to regain nerve sensation, for them to move and squish the way breasts do, and ultimately it meant no exchange surgeries later in life.
The challenge? I was living in an area of the country where the closest medical professionals that performed this surgery were three to five hours away. I found my team in New Orleans, at The Center for Restorative Breast Surgery. I’d then spend the next eight months traveling back and forth between New Orleans and Pensacola, Florida, for appointments and surgery.
And so my journey began.
The endless appointments with doctors weren’t easy. I did feel better knowing each time I walked into an office prepared with my notebook filled with questions, that I was truly taking control — something my mother didn’t have the opportunity to do.
It was through my own research, through thoughtfully prepared questions and checklists, and the support of my amazing husband that these appointments led us on a path of reassurance. My experience at a top-notch medical center that specializes in autologous tissue reconstruction meant I was not only getting the best care, but that I could breathe through the process. They were absolutely at the top of their game.
It’s unrealistic to say “knowledge is power” and move full speed ahead immediately. Even if you know what you want to do to manage your risk, whether surveillance or surgery, you have to slow down for a moment and feel your emotions.
Ultimately, the knowledge is powerful. To have the opportunity to start surveillance for cancer earlier than so many, and the chance to make medical decisions that can lower your risk below even that of the national average, is a gift.
If you’d have asked me at the beginning of all of this if this surgical journey would be emotionally healing, I would have probably laughed. Yet somehow through these doctor’s appointments and surgeries I started to face my fears, recognize my grief, and work through my emotions. I was learning and I am still learning that by taking control of my health risk, I am also taking care of my mental and emotional health.
While I’d never wish membership to this BRCA club upon anyone, I’m grateful for the power it’s given me to take control of my health, and even more grateful for the release it has given me emotionally”.
Article Source: everydayhealth.com