My BRCA2 Story: Mastectomy Without Reconstruction

Originally published on Facing Our Risk Blog on January 22, 2019

In the XRAYS review, Juliet’s story: No reconstruction is a post-mastectomy option, Juliet’s experience resonated with me. My mastectomy journey began in August of 2003, when my sister called and said, “Well, I’m one of the seven percent of women who get breast cancer under the age of 40.” She said that she was diagnosed with triple-negative breast cancer. Fortunately, she made it through a lumpectomy, chemotherapy and radiation free from complications. She is now a 15-year survivor!

In August of 2013, I tested positive for the BRCA2 gene mutation. Soon after, I found FORCE. My husband and I met with a genetic counselor and an oncologist. They recommended heightened surveillance or a double mastectomy and an oophorectomy.

I had years to contemplate options. I knew I did not want breast reconstruction. My husband did not care about breasts. He just wanted me to be alive. Facing two major surgeries, we made the decision to do the least invasive surgeries and get on with our lives.

I recalled my sister’s determination and called breast surgeons. The receptionists asked if I had a plastic surgeon. When I explained I was not having reconstruction, I heard, “Oh, honey, you’re too young to be without breasts” or “What about your husband?” I was facing two major surgeries; I was not concerned with cosmetics!

Finally, I found a breast surgeon who’s receptionist never asked about a plastic surgeon. I told the doctor I would not be having reconstruction. She respected my decision. I felt tremendous relief and scheduled a double mastectomy for December 10, 2013. When I shared the news with relatives and friends, I was stunned by their reactions. “You don’t have cancer!” “Do you have cancer and you’re not telling me?” “You know what you’re doing is really barbaric?” “It is so selfish what you’re doing; what about your husband?” and “I think you’re nuts.” I even had physicians who asked, ”Who told you to have that test?” “Who put you up to this, Angelina Jolie?” I knew I had to preserve my energy for my surgeries. The ability to have these lifesaving surgeries was a blessing—my mother gave me a bracelet engraved with “blessing.”

I now host fundraising events and facilitate a support group on behalf of FORCE. Filmmaker Alan Blassberg featured our story in the documentary film Pink & Blue.

A few years ago, I received a message from a woman named Melissa, who had reason to believe she was my half-sister. She said her mother had died of breast cancer. She saw my television interview and the trailer for Pink & Blue.

Melissa unfortunately tested positive for BRCA2, and she is currently having heightened surveillance. Our family will support her throughout her BRCA2 journey! We might have inherited a bad gene, but nothing compares to inheriting a baby sister!

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Marla Ruhana