Turkey Dinner, Christmas Shopping, A Wedding and…HBOC?
Leslie had everything planned for her upcoming Thanksgiving feast. Her Christmas shopping lists were in order, and she was ready to host the rehearsal party for her son’s December 28th wedding. What she wasn’t ready for, was the unexpected arrival of cancer.
Fast forward to 1996, Thanksgiving week. I felt a marble-sized lump between my navel and right hip. I named her AGGIE because it was a mystery right out of Agatha Christie and what could be more AGGRAVATING right before hosting 18 people for turkey, beginning Christmas shopping, planning Christmas Eve dinner and my son’s December 28th wedding, for which I was wedding planner and rehearsal dinner hostess? A pending surgery. Ovarian cancer was the post-op diagnosis. But somehow, with the love and support of my husband, family and friends., it all got done. The mother-son dance was to the music of Kermit the Frog, “The Rainbow Connection.” And 16 years later, it is the ringtone on his cell phone.
The experience so impacted me that in the year 2000, I jumped at the opportunity to help others by taking a patient and community relations position at the center that treated me. In this role, I continue to offer education and support to patients and their families. And at the center I, along with my colleagues, first learned about the BRACAnalysis offered by Myriad Genetics. We began to develop a referral program for the center.
About three years later (2003) noticed I abnormalities in my breast. The radiologist suggested a watchful approach for what was “likely an age-related papilloma.” However, I mentioned my concerns to my gynecologic/oncology healthcare professionals who had treated me for my ovarian cancer. There was no watchful waiting! Within two weeks I was diagnosed with breast cancer and facing a surgery decision.
During this time, I had been interviewing a geneticist as part of my role in establishing a genetic testing referral program. I asked to be the center’s first referral because I wanted to understand what our patients would go through. I submitted a sample, but due to urgent timing had to schedule my surgery prior to receiving results. I underwent a bilateral mastectomy, and the surgeon found cancer in both breasts.
Back then it took longer to receive results, and in my case I had to schedule the surgery without my BRCA status. However, when I received the results, I still felt confirmed knowing that the cancer wasn’t caused by my actions but was passed through a genetic mutation. And it answered some lingering questions. Looking back at my mother’s cancer experience, I now know that she had ovarian cancer.
I’m a strong advocate of testing. In my role at the cancer center, I see patients and their families and how the knowledge or lack of knowledge about their BRCA status impacts their lives. Knowing they are NOT a carrier can be as powerful as knowing that they are. For those who know, it empowers them to become “previvors” –to catch cancer early or prevent it altogether. Testing is a gift to our children.