A year ago, I began a journey to protect myself and my loved ones from the risks of ovarian cancer associated with BRCA, which claimed the life of my sister Jeanne. Jeanne was not positive for BRCA, but genetic testing showed that she had a BRCA-1 variant that was of “uncertain significance.” The doctors did not recommend genetic testing for me or my siblings, and we focused on treating Zhanna. The last two years of her life were cruel; they were heartbreaking. In February 2020, Jeanne died.

Then, last November, I got a call saying they had reclassified her BRCA variant – the value was no longer indeterminate, now it was clearly pathogenic and we should get tested. I was shocked, I didn’t even know it was possible. A few days later I had a simple blood test that confirmed that I had the same BRCA-1 variant as Jeanne. I immediately scheduled a prophylactic hysterectomy. But when my pathology report came back, my doctors and I were stunned to find that I had malignant cells and a tumor in my left fallopian tube.

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It was only thanks to the genetic roadmap my sister left behind and the power of scientific progress that we discovered my cancer early enough to do something about it. My doctor said that if I hadn’t been found, four months later I would probably have stage three like Jeanne, with very few options. Instead, I was diagnosed with stage 1 ovarian cancer and immediately started six rounds of chemotherapy. Today I am cancer-free and there is a 90% chance that ovarian cancer will never return.

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I am sharing my story because my journey is not over yet. I needed time to recover from chemo and regain my strength, but I still had one mountain to climb. The risk for me was greater than ovarian cancer alone. BRCA mutations are associated with up to a 75% risk of developing breast cancer, as well as an increased risk of prostate and pancreatic cancer.

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I had two options: I could carefully monitor my health with annual mammograms, MRIs, and ultrasounds, or I could have another operation to lower my risk. I wanted to get all the facts before making a decision. After talking to many doctors and seeing everything my sister went through, I decided that I had to do everything I could to improve my chances.

On December 1, 2022, one year after my hysterectomy, I had a double mastectomy. I held my breath while I waited for the results of my pathology. Thankfully the report came back clean and clear and my risk of developing breast cancer was reduced by over 90%. Thanks to Dr. Eliza Port, my oncology surgeon, and Dr. Mark Sultan, my reconstructive surgeon at Mount Sinai, I am on the right path to recovery.

When it comes to choosing between observation or operation, everyone chooses for himself. The most important thing is not to let everything take its course. Of the 25 million women and men worldwide who have the BRCA mutation, only 10% know they are carriers. When I talk to people about genetic testing, a lot of people say, “It’s too scary to know.” I’m here to tell you, it’s scarier not to say.

My sister, like many people, was so busy taking care of everyone else that she ignored what her body was trying to tell her. My advice: trust your intuition, know your family history, learn more about genetic testing, and be your own advocate. There are physicians all over the world working on better options for BRCA mutation carriers; in the meantime, own your journey and spread the word.

I have one more operation to complete the reconstruction. They say this part is easy, but I can assure you, it hasn’t been for the last five years. No matter how relieved I am to get to the other side of this, I will always have a heavy heart. I will never recover from losing Jeanne and never accept the gift she gave me in the process. My sister’s journey saved my life and I hope that by sharing mine I can save someone else.