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Being Her Own Advocate

314579_2324257259329_1036530036_32662837_1047868861_nby Rachel Horn
(Epsilon, University of Southern California)

One day last October I walked into my parents’ apartment to see my father excitedly waving a magazine at me. I squinted to see the title, and chuckled: The Lyre. My dad had once again read through Alpha Chi’s magazine.  As I looked harder at the cover, however, I realized there was a reason he was so pumped about this particular issue. The main story caught my eye: “Rebecca Holmes: Taking Control of Her Health and Future.”

I spent the next few minutes reading Rebecca’s story about her family history of breast cancer and her decision to have a prophylactic mastectomy. The timing was impeccable; I had just learned about my mother’s second breast cancer diagnosis and our BRCA2 mutation. This genetic mutation had suddenly upped my risk of breast cancer to as high as 87%, and I was strongly considering a prophylactic mastectomy.

Rebecca’s story spoke to me on multiple levels. I could relate to the pain of watching a relative suffer from cancer, and I also understood Rebecca’s fears for the future. The following line regarding her surgery really hit me: “On August 12…the day a life was taken from me, I would be giving a life to my children. It could not have been a more poignant, beautiful day.” So powerful!

I was only 21 when I found out about my BRCA2 mutation and certainly had no immediate plans to have kids, but I still felt concerned for my future: my future health, my future career, and my future family. Breast cancer, it seemed, was inevitable. My mother had been diagnosed twice and she was just 58. It was only a matter of time before I would have to put my career on hold and tell my children that I was sick.

Or would I?

Like Rebecca, I elected to have a prophylactic mastectomy. I was encouraged by her story and the stories of other women, and I wanted to take control of my health and my future. A mastectomy would dramatically reduce my risk of breast cancer. My mastectomy was on March 13, 2012.

Before committing to the surgery, I made sure I was informed. I was fortunate to have a very talented and personable medical team. After she found out about my BRCA2 mutation, my genetic counselor explained my options, such as chemoprevention and surveillance. When I told her I was leaning towards a prophylactic mastectomy, she laid out all of the facts and figures and provided me with resources.

My doctors—a breast surgeon and a plastic surgeon—were also very supportive. They kept active with emails, even responding to my random questions at 1 am! They encouraged my questions and gave me honest answers instead of sugarcoating or dumbing-down their responses.

I also sought out support from young women who had gone through a mastectomy. An organization called Bright Pink put me in contact with a mentor. My mentor was in her twenties (like me) and had opted for a prophylactic mastectomy a few years before. Her information was invaluable; it was priceless knowledge that could only be provided by a person who had gone through her own mastectomy. My mentor’s support helped me overcome the physical and emotional struggles that accompanied my surgery.

Through all of my research and conversations, I affirmed that the prophylactic mastectomy was the right decision for me. And when it came time to defend my choice to others, I was backed by my research.

No one told me flat out that they were against my decision to have a mastectomy, but I did face opposition and questions, particularly from older generations. People often said I was rushing into it, or they asked why I didn’t “wait to see what happens” with cancer research. These questions were sometimes frustrating, but I knew that it might seem completely ludicrous for a perfectly healthy 21-year-old to have a mastectomy.

I had to explain to people the science behind the decision, letting them know about the BRCA2 mutation and how it was responsible for my mother’s breast cancer. “If I live long enough and have enough breast tissue, I will get breast cancer,” I often said. I told them that insurance companies were legally required to provide breast reconstruction for mastectomy patients. And I shared my personal ideology and fears with them, saying that I wasn’t prepared to sit idly and wait for a miracle breast cancer cure that might not come in time for me.

Once they heard my logic, people couldn’t argue. After all, no one was forcing a mastectomy on me and I certainly wasn’t trying to force a mastectomy on anyone else; it was a decision I made myself—an informed decision.

I can’t stress enough the importance of research and getting the facts. No illness or body is exactly the same for each person; everyone has the right to special treatment and decisions tailored to their unique needs. But you are your own advocate, and unless you speak up for yourself, someone else might try to make an important choice for you.

If I hadn’t used all of the resources at my disposal (the Internet, my genetic counselor and doctors, my mentor, books) I might have never gone forward with my mastectomy. I could still be wallowing in fear at the daunting risk associated with my BRCA2 mutation instead of actively planning for my future.

My prophylactic mastectomy allowed me to turn a potential death sentence into a story of hope. Through my blog, Ticking Time Bombs, I wish to assist other high-risk women as they make their own choices regarding their breast health. After all, I couldn’t have made my decision without the priceless information I learned from women like Rebecca Holmes, who were brave enough to share their stories.

One Comment

  1. Ellen Vanden Brink |

    We’re proud of you Rachel and what we know you will accomplish: helping others