As a Previvor myself I would like to share my experiences with everyone. Whether you may know someone with the BRCA gene mutation or you yourself are a carrier of this gene mutation. I am willing and proud to share my journey of knowing and living with the feeling of fear that comes with this gene mutation for the past 17 years.
I believe that sharing my experiences will give strength and a sense of direction to those who understand the fear I lived with. I also hope to share with my readers a seed of hope. I am so grateful that I am a survivor of a predisposition to cancer, a Previvor.
Something I wished I had when I first discovered I had the BRCA gene mutation is a first-hand foundation to refer to. When I found out that I had a higher risk of developing breast and ovarian cancer, I was truly crushed. Having sleepless nights of researching my odds and digging into my family history I soon realized that I was a perfect candidate for cancer.
I feel like it was especially hard because I knew of no support groups, I had very limited access to resources, and it seemed as if there were no clinical trials I could attempt or even find for that matter. I had to go from doctor to doctor until someone sent me to a genetics specialist. At 22-years-old it was confirmed that I carried the BRCA gene mutation.
As soon as I found out I was a carrier of the BRCA gene I was conflicted. Should have I got tested, should have I ignored it altogether? Time after time these were the thoughts that swirled through my mind. I remember being devastated and worried.
I always wanted children, so my first thought was that I didn’t want anything to stand in the way of me not having my own biological children. I decided to push my fear aside until I was done childbearing. This gene might take away my breasts and other organs and cause me lots of pain, but I vowed it wouldn’t take away my ability to have my own children.
I don’t feel like I ever stopped my life because I carried this gene mutation. I mostly felt that one day during a doctor’s visits they would give me results that would interrupt my life. And at that moment my world would come crashing down. Having to live with that was annoying, frustrating and overwhelming.
After 12 years of being watched by my breast surgeon and OBGYN, I no longer wanted to be under surveillance. I realized that close observation wasn’t protecting me. I discovered my health risks at such a young age and I was tired of doctors monitoring me! Waiting and watching did nothing to make me feel better.
My dream of bearing my own children was completed. I told my husband, at the time, that once we completed our family I would move forward with a full hysterectomy and a double mastectomy. It was preventive, but I wanted to do what was in the best interest for myself and my family.
My ex-husband was completely on board. This was undoubtedly one of the biggest decision of my life. But I’m glad it was one that I had the knowledge and opportunity to make. Overall I am very thankful that I was tested.
Ultimately, it’s up to you to make the most informed decision regarding your health. To get tested and to go through the preventative surgeries can be life changing. Same goes for if you
choose not to get tested or go through the preventative surgeries. However, whichever you choose it’s not something that should stop you from living your life!