I am pleased to once again this year feature two guest posts during HBOC (hereditary breast & ovarian cancer) Week. This year I have the privilege of sharing a mother’s and her daughter’s stories. The first post is by my good friend and fellow advocate and author, Nicki Boscia-Durlester, a cancer survivor whose family history includes a staggering number of cancer diagnoses and deaths. The second, soon-to-follow post will feature Nicki’s daughter, Ally, who shares her previvor story. Many thanks to Nicki and Ally for their willingness to share their stories with you, my dear readers.
by Nicki Boscia-Durlester
One of my earliest childhood memories is of my mother slowly crawling her fingers up our kitchen wall. At the time I thought she was playing Itsy Bitsy Spider. I would sing along in amusement as she struggled to reach as high as she could. I had no idea she was trying to strengthen her right arm, which had been ravaged by a radical mastectomy. I was 5 years old. At 58 the image is as vivid as that day in late May 1962.
I had no clue then that my mother and six of her sisters would be diagnosed with hereditary breast and ovarian cancer (HBOC), linked to a BRCA2 gene mutation in my large Italian family. Six of the sisters, including my mother, would lose their lives to HBOC. Our specific BRCA2 mutation would not be discovered until 1998, after decades of research by the National Institutes of Heath (NIH). My family had participated in a study at NIH to identify mutations linking malignancies in large families.
I suppose I always knew I would get breast cancer, especially after finding out I carried my family’s BRCA2 gene mutation. I had my chance to make a preemptive strike, but chose active surveillance instead. Maybe I thought I was destined to walk the same path as my mother or that I did not deserve to avoid the same fate. It seemed like a family business I was predestined to join. I often struggle with that. After all who would not take the opportunity to avoid breast cancer? Once diagnosed, I felt liberated. I finally had the reason I was looking for to remove my breasts, without people thinking I was a hypochondriac.
Eighteen years earlier at the age of 34, I had a prophylactic total hysterectomy; that was prior to knowing I had the mutation. My mother also had fallopian tube cancer, a stealthy opponent without early detection methods, which eventually claimed her life. In 1990, prophylactic surgeries were not in vogue. I thought if I also removed my breasts people would think I had jumped off the deep end. Removing them without a cancer diagnosis seemed too radical at the time, a clearly myopic way of thinking, that came back to haunt me. Hindsight is a curse.
In the aftermath of my diagnosis, bilateral mastectomy and recovery my only daughter tested positive for my family’s BRCA2 mutation at the age of 23. She weighed her options carefully for three years before having a prophylactic bilateral mastectomy. At a later date, hopefully after having children and by the age of 40, she will prophylactically remove her ovaries and tubes. At some point in the future my only son will also test for the mutation. I hope and pray he is negative.
My life has changed course since my diagnosis of Stage IIA ER+, PR+, HER- breast cancer in March 2009. Supporting other survivors and previvors has become my life’s work. After self-publishing my memoir, Beyond the Pink Moon, I founded a Facebook group by the same name, a global support group for breast and ovarian cancer survivors and previvors. Members also include renowned doctors, RNs, genetic counselors, healthcare professionals and HBOC advocates. It is an active forum for discussion that includes breaking news and relevant research articles and studies in addition to healthy lifestyle and prevention tips. With almost 3,100 members in 30 countries, we call ourselves The Pink Moon Lovelies, a name coined by fellow moderator, Susan Long Martucci, a two-time breast cancer survivor. Melissa Johnson Voight, a BRCA1 previvor also moderates the group. Collectively, we published The Pink Moon Lovelies: Empowering Stories of Survival, an Amazon best-selling anthology of 50 stories from breast and ovarian survivors and BRCA previvors from seven countries, with a Foreword written by world renowned breast surgeon, Dr. Kristi Funk, Medical Director of Pink Lotus Breast Center.
It has been fifty-two Octobers since I watched my mother, Bianchina Buschi Boscia, crawl her fingers up our kitchen wall while singing along to Itsy Bitsy Spider. I cannot help but draw an analogy between the spider, who never gave up, and the search for the cure. Who would have thought more than a half century later the conversation would remain the same, only now it is not in hushed whispers behind closed doors. I hope someday the elusive cure will end the dialogue about breast cancer. In the meantime, like the spider, I will never give up. I will continue educating with my fellow advocates until someday we can rest in the sun. In my case… Beyond the Pink Moon.