Lennie's "I am Oneinforty" Story

I am Oneinforty. I’m alive because of genetic testing and preventative surgeries.

I grew up with one sibling, my sister Stacey, in the Boston metro north suburbs. We were a small Jewish family with roots back to Eastern Europe. The Russian revolution and the resulting pogroms propelled my ancestors to flee the old country and arrive in Massachusetts over 100 years ago.

My paternal grandmother, for whom I was named in Hebrew, had already died in the 1950’s before I was born. She died of brain cancer (or had it begun as breast cancer)? That was the first vague family clue, but science hadn’t caught up yet and we didn’t know anything about our ancestors’ health histories.

My paternal aunt had been diagnosed with breast cancer twice and successfully treated, both times in opposite breasts. In 2001, my father died of cancer. Sometime mid-2013, Auntie was diagnosed again, with Stage 3 ovarian cancer. In early 2014, Stacey was diagnosed with Stage 4 ovarian cancer. Because of Auntie’s testing, we soon learned about the BRCA gene mutation that my father unknowingly passed to Stacey and me (I was encouraged to get tested, and discovered that I’m positive for the BRCA1 mutation, delAG187). That wasn’t the only thing I learned.

I chose surgery versus surveillance and decided without hesitation to have a complete hysterectomy first. I was already in menopause, however, I do understand the dilemma for childbearing age women taking this step. After electing to have a prophylactic bilateral mastectomy with reconstruction, I was diagnosed with stage 1 breast cancer. I already had an aggressive triple negative tumor in one of my breasts despite years of annual mammograms. While Stacey was in remission, I was having chemotherapy.

Auntie is almost 5 years without recurrence from her ovarian cancer diagnosis.

Stacey fought a very courageous battle and passed away early 2017 at the age of 53. She desperately hoped that medicine would catch up and she’d ultimately be cured. Stacey would make me laugh by calling us a couple of “over-bred poodles.” I miss her funny wit, her kindness and generosity. I admired the courageous way she lived her life as a working artist. Stacey eventually understood that she couldn’t extract a “life-guarantee” from her doctor, but, if Stacey knew earlier about our family mutation, she may have had a chance. She is in my thoughts every day, forever young.