Janet's "I am Oneinforty" Story
I am Oneinforty…as are my younger sister and daughter. I’m not sure if that makes our family three in forty, or three in one hundred twenty; but knowing that there are many, many others with this “distinction” empowers me to share my personal Oneinforty story.
Growing up in the 1950s and 1960s with a father who was a surgical oncologist and breast cancer specialist, I had heard of the disease, but only knew it as a serious medical condition that required my father’s compassionate care and, for particularly ill patients, a batch of my mother’s homemade chicken soup. My only knowledge of a family connection with the disease was a paternal aunt who was diagnosed at 32 and died at 49, my paternal grandmother who developed breast cancer at 81 and a cousin on my mother’s side who developed and died of breast cancer in her mid 30s. I certainly saw no indications of this as a pattern, as in many families, or to think that cancer would ever touch our family closer to home.
So it came as a rude awakening in December of 2010 when my younger sister Lisa, age 50 and living in Florida with her husband at the time, called to share the news that they would be unable to fly up to Boston for our annual family holiday celebration because she had just been diagnosed with Stage 3c ovarian cancer and would need surgery the next day. Unfortunately, although Lisa had been complaining of vague abdominal symptoms for nearly six months, none of her doctors recognized the signs of ovarian cancer to consider this as a possible diagnosis until it had progressed to an advanced stage.
During a post-surgery visit, however, her gynecologist (to his credit) asked Lisa whether she had considered genetic testing, knowing of her Ashkenazi Jewish background. Following testing and learning that she was BRCA1-positive (likely a cause or contributing factor of her cancer), Lisa shared the news with me and my older sister and suggested that we also get tested. There was no question that we would do so and do it together so that we could be supportive of each other, regardless of the outcome. Test results showed that my older sister was negative but I was BRCA-positive—the luck of the 50/50 draw—and that the likely carrier was our father (ironic given his medical specialty).
After consulting with several local specialists, it was an easy decision for me to undergo a prophylactic bilateral salpingo-oophorectomy (BSO) as I was post-menopausal and had completed my child-bearing. Since then, I have chosen to follow the enhanced breast screening protocol, not prepared to consider the surgical alternative; and have continued to educate myself and my family through involvement with FORCE (their national conferences and local support groups are incredible sources of information and empowerment), and over the past few years, with Oneinforty’s special mission to inform the Ashkenazi Jewish population of its heightened risk for these cancers.
More challenging has been the process of convincing my daughter to consider genetic testing, knowing of her 50/50 risk and the decisions she would face at her age if she were to test positive, although the reassurance and “peace of mind” if she were negative. My daughter was 25 at the time of my sister’s diagnosis and had genetic counseling, but opted not to be tested. She was nearly 30 at the time of her Aunt Lisa’s passing after a 4 ½ year valiant fight against the disease, but it took until this past year, at the age of 32, for her to finally be ready to be tested. Unfortunately she drew the same short straw as I did and is now dealing with the choices she needs to make for vigilance and prevention while she continues to work to find success in her personal and professional life.
Looking back, my biggest regret is that the information about BRCA gene mutations’ connection with the Ashkenazi Jewish community was not known, or certainly not publicized, in the years leading up to my sister’s diagnosis. She might still be alive had she known and been tested. My biggest hope is that organizations like Oneinforty, FORCE and a growing number of others can help spread the word among the medical and Jewish communities of the need for broader testing, as well as better prevention and treatment options for members of future generations like my daughter.