My journey of knowing that I am a carrier of the BRCA 1 gene mutation began in New York seventeen years ago, as I was preparing to move to Israel. My mother told me about the gene and asked that I get tested before moving so far from home, because of our strong family history. After discovering that I was a carrier, through my father’s side of the family, I committed to doing bi-annual breast screening, as recommended to me at the time. A few years later, after a series of abnormalities had been detected, requiring multiple biopsies, the process of tracking and testing had become too difficult for me to manage on an emotional and practical level. It was then that I made the decision to have a prophylactic double mastectomy with reconstruction.
I was a young mother, wanting to focus on having my children and not worry about any gaps in testing, since I would be unable to perform the screening while pregnant. The fear of ‘if’ or ‘when’ they might find something else became a constant in my daily life. I had a wonderful support system in my family, as well as from various organizations and medical professionals. Thank God, the process, although long, went well, and over time I healed, both physically and emotionally from that experience, and was released from the fear I had been living with, to feelings of relief and freedom. I knew, however, that once we were done having our kids I would need to revisit things, as I would then need to make decisions about having my uterus and ovaries removed.
Ten years later, my home base and extended family had shifted to Israel and it was time for me to figure out how to proceed. I knew I needed to understand what the most up to date research was, schedule multiple appointments, and make a plan. I started shooting in all directions trying to find out how best to approach this, as it felt like an overwhelming task from the outset. What became clear relatively quickly was that every road I went down led me to the same destination, Dr. Pnina Mor and the NOGA clinic in Jerusalem. I reached out to the clinic, overwhelmed by the familiar rush of questions, fears, and nerves about this next part of my journey. I was met with someone at the other end of the line, offering to coordinate all the services I needed to take care of. They continued to help me navigate having an MRI, ultrasound, consultation with a surgeon and blood work, all with the least stress possible. I also felt like nothing would fall between the cracks. I was able to find a surgeon that I felt confident with and who was sensitive to the emotions connected to everything surrounding the decision, for me and for my husband. Once again I also sought out women who had been in my position to speak with, which led to widening my circle of support and knowledge.
It has now been a little over a year since I had the surgery, almost exactly ten years from my first surgeries. In many ways, the anticipation leading up to surgery, and the fear of how I would feel afterwards, more emotionally than physically, came as a surprise to me. Knowing I was introducing a whole new, often not spoken of, vocabulary into my life with words like menopause, Hormone Replacement Therapy, etc. scared me. I was lucky to have connected with so many amazing people over the years, and had so much love and support. Yet I was about to find myself, once again, looking the same on the outside, and belonging to a different peer group on the inside. It brought up the familiar questions and fears as they related to femininity, intimacy, motherhood and overall well-being. Thank God it all went smoothly, and while I know there is maintenance and follow up to continue with, having that decision and recovery behind me is not a small feat, in my eyes.
While being a carrier is not something I have ever felt defines me, it is forever a part of me. Despite the challenges that come with it, it has also given me the opportunity to meet and connect with so many inspiring people, and has planted the motivation within me to see where I can be of help to this community, to advocate for both our physical and emotional health. I am at a point in my life, as a forty-year-old mother of four, that I feel a sense of pride, relief and confidence in my decisions as they pertain to this journey that I began years ago. While it was never a thought that my story would be something I’d be so public about, I saw early on that the significance of sharing was that it allowed for mutual support. Being able to connect to people, listen to their fears and strengths, and encourage informed decision making as it relates to our health, has added a truly valuable layer of meaning to this journey for me.
Liora will be elaborating upon her personal story and accompanied by Dr. Pnina Mor, founder and director of the NOGA clinic in Sha’are Tzedek, Jerusalem, at the BRCA awareness event in Modi’in on Sunday the 11th of December, 17th of Kislev, at 8:30pm. Click here to register and for additional information – https://theedencenter.com/brca22/