In the fall of 2018 my doctor told me that due to my family history of cancer that I was a good candidate for genetic testing. So, I elected to have the test done. After 4 weeks the test results came back and I was told that I was at high risk of getting breast cancer due to a gene mutation.
I do not have the BRACA 1 or 2 gene which is the most common. Instead, I have the Chek2 gene mutation. There are many different gene mutations linked to breast cancer. The results showed that my life time risk of breast cancer was 46%. Anything over 20% is considered high risk. I knew right away that I wanted to be proactive and reduce my risk of breast cancer. I had a prophylactic bilateral double mastectomy on a March 25th 2019. Many health insurance policies will pay for the surgery if your probability of getting breast cancer on the genetic test is high like mine.
After my surgery, my test results from the routine biopsy done on the breast tissue gave me all the validation I needed. My pathology report showed I had pre-cancerous cells in my right breast. It was just a matter of time before I got breast cancer. I am so glad I had genetic testing done. It potentially saved me from developing breast cancer. I made the right choice.
As I was going through my journey, I really wanted to connect with others going through the same preventive surgery. I was looking into support groups for previvors like myself. There are many support groups offered to breast cancer survivors but few are available for previvors and I could not find any here in Rochester, NY. I am thankful that Rochester Women’s Magazine Online featured us on the cover for their October 2019 breast cancer issue to spread the word about our support group for previvors. Click here to see the cover story.
I know there are others out there like myself who find out they are high risk for breast cancer and elect to have a prophylactic mastectomy. Our journey may be different than someone going through breast cancer but we still have a difficult physical and emotional journey and need support and advocacy. I longed for a connection to other previvors. To feel that I was not alone in this journey and to also help others navigate this road I decided that I wanted to start my own support group. That’s when I created Breast Previvors ROC.
Cancer previvors are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor.
In this journey, it is so important to be able to talk with others that understand what you are going through. I want the community to know there is support for other Previvors like myself. My support group meets monthly in Rochester, NY. We have a fun night out while offering support to one another, sharing stories and answering questions. I also have a private Facebook page that allows for our support group to lean on each other for questions and answers discreetly. Being a previvor isn’t easy but it’s been a blessing. I am so grateful to be able to support and empower others in their own journey. – Cara Cappello
Join our breast cancer previvor support group that meets in Rochester, New York. Join our private Facebook page!