My mother was a lot of things- deeply caring, independent, fiercely loyal, inspirational, hilarious, and the best person I’ve ever known. At 15 years old, my world turned upside down when she was diagnosed with BRCA1 positive associated advanced ovarian cancer. Three years of fierce fighting later, she passed away. Just three years after we lost her, at 21 years old it was my turn to choose to be tested for the BRCA1 gene mutation, which came with a significantly elevated risk of breast and ovarian cancer. I was told I had a 50/50 chance of inheriting it.
The first emotion I identified with was fear. Fear of being sick and dying of course, but also fear of losing control of my life. I was afraid that by being handed a positive result I would be guaranteeing myself a life of looking over my shoulder, waiting for the moment I’m handed a cancer diagnosis. How will I learn to live in the moment with thoughts of losing my reproductive organs, chemotherapy, infertility, and illness floating through my mind? If I want children, do I have to get married by a certain age? Will I be living my entire life based on a countdown to inevitable diagnosis or preventative surgery?
My fears made me feel powerless at first. I thought getting genetically tested would make me feel like I had no control. I still remember lying on the floor of my kitchen the night I got the call from my genetic counselor that I was positive in late 2014, not knowing what my future would look like. I couldn’t process it all at the time, and put it to the back of my mind- I told myself that I was young, and I had time to think about it. I met with my genetic oncologist, who didn’t recommend I start screening for a few years, and so I continued on with my life.
A few years after my testing results returned, I started work as a Physician Assistant in the Emergency Department at a Boston hospital that is very closely affiliated with a major cancer institute. I started providing emergency care to oncology patients regularly, some of the loveliest and strongest patients I’ve ever met, many of whom were fighting breast and ovarian cancer. I felt privileged to be able to take care of these patients, but I also felt as if my job was forcing me to acknowledge the risk I knew I had, and started to think about what my future plan was going to be. I also was able to meet other women going through similar things as me through the non-profit The Breasties. I met young women who had gotten preventative surgeries, currently in treatment for cancer, living with metastatic cancer and that had lost loved ones to cancer. I learned so much from these women who have walked this path before me. To this day I am so grateful for their friendship and presence in my life. After months and years of reflection, I began to realize that choosing to be tested gave me power- the power to make my own decisions when it came to my health and my life. I stopped trying to run from my diagnosis and started to acknowledge and process my emotions.
Allowing myself to stand in my fear has taught me that fear is knowledge of a risk, but that knowledge can be turned into power. Because I know I’m BRCA1 positive, I have the ability to take action and reduce my risk on my own terms. My timeline will be determined by me, and me alone. In 2018 I began regular screening for breast cancer- I met with my genetic oncologist again and had my first breast MRI. I spent a day at the cancer center getting testing and waited a harrowing week for the results (they were negative). That was the week I decided to move forward with prophylactic surgery. I was determined to take control, and for the first time in a long time I truly felt I was ready.
The first breast surgeon I met with regarding preventative surgery was surprisingly discouraging- she voiced her concern that I would not be able to “live a normal life” without my breasts. It was days after that appointment until I realized that although that may be her opinion, it doesn’t have to be mine, and it frankly wasn’t mine. I define what is “normal” to me, and what is important to me in my life- and that is my ability to live a long healthy life with the people that I love, doing the things that I love. It is a life without breast cancer. I decided that I would not let my self worth or identity be defined by the presence or absence of natural breasts. I decided that yes it would be nice to breastfeed my future children if I am lucky enough to have them, but it is more important to me that they don’t lose me to cancer. And I thought about the person my mother was- I know that if she had the knowledge that I am privileged to have, she would have done anything she could have to save her own life. I found a new breast surgeon, one that not only impressed me clinically, but told me that she trusted my decision and that I understood the risks and consequences, and that it is my body and my choice.
And so in November 2019 just short of 26 years old I chose to undergo a risk-reducing bilateral prophylactic double mastectomy. It was not an easy road by any means- there were unexpected complications, and the journey to recovery continues. But I knew the moment I got home from the hospital that I had undoubtedly made the right decision. In retrospect, I’m so glad I didn’t rush myself into a decision immediately after testing- I needed those four years of self reflection to figure out what was going to be right for me. It’s not to say that risk-reducing surgery is the right decision for everyone- it’s not a decision to be made lightly, and every woman has the right and the power to decide what is right for her. It’s also not to say that I have outgrown my fears- I still become overwhelmed by the thought of my ovarian cancer risk, a journey that I have barely begun. But I know that moving forward I can trust myself to make the right decisions for me. I know that I do live a fulfilling and happy life, and I have every intention of making it a long one. I know that I’m not looking over my shoulder waiting for a diagnosis- I’m only looking forward.
By Ari Rossetti
