My name is Kathy, I am 46 years old. I underwent genetic testing two years ago because my mother was a carrier of the BRCA1 mutation, and because within our Ashkenazi Jewish community, the risk of carrying this gene is significantly higher.
When I learned that I was a carrier of the BRCA1 mutation, I was in shock. It felt as if I had been sentenced to develop cancer one day. I also experienced a strong sense of injustice, followed by the constant feeling of a sword of Damocles hanging over my head.
When you are told that you carry this mutation, the oncologist discusses the possibility of preventive surgeries, but these consultations often feel quite cold and difficult. There is also a lot of uncertainty surrounding these procedures, and for me, fear played a major role — I was very stressed by the idea of undergoing such operations. I therefore initially decided to focus only on the necessary screenings, such as mammograms and MRIs, as well as an adnexectomy, which involves the removal of the ovaries.
Despite this first operation, I still could not live peacefully, as the risk of developing breast cancer remained. I was constantly searching for information about this gene and for others who were carriers.
At first, I found a Facebook group bringing together people with this mutation, but it quickly became anxiety-inducing for me, as there were very few positive stories about preventive mastectomy. In the end, this group mainly serves as a space to share experiences when things go wrong. Being confronted with this reality was difficult, but when I saw that the majority of members eventually chose preventive surgery, I realized that I had little choice if I wanted to live peacefully again.
Later on, I learned that there was a BRCA association in Belgium. I got in touch with its founder, Martina. We met and discussed her own surgery and experience. I felt much more reassured, and she strengthened my decision to undergo a preventive mastectomy.
I truly believe that talking with people who have already undergone this surgery is essential when considering a preventive mastectomy. Martina is an extraordinary, caring person. She provided me with clear and coherent information, shared her journey, and answered my many questions.
It must also be said that consultations with surgeons are not always easy; empathy is often lacking. There is nothing more reassuring than meeting and talking with people who can share their own lived experience.
Afterwards, I also met other members of the association, who shared their own journeys and surgeries with me. I felt deep admiration for them — they were all incredibly courageous and compassionate, open to sharing their feelings. I want to thank them all for their support; they are true warriors. Their testimonies gave me the courage and strength to take action and undergo a preventive mastectomy under the best possible conditions.
At the same time, I followed psychological support for several months, which also helped me take this step. I had the surgery at the Bordet Hospital in May of this year, and everything went very well. The medical team was professional, and the nurses were incredibly caring. The operation went smoothly, and in hindsight, I realize that the stress I experienced beforehand was far greater than the operation itself.
Today, I am quite proud of myself for having taken action to reduce my risks and for giving myself the chance to live a more peaceful life.
BRCA+ Network asbl
