My Oneinforty story is a tragic rewrite of an old adage: What you don’t know CAN hurt you.
In late summer of 2012, my beautiful daughter, Sheryl, was less than two months away from her wedding when she discovered a lump in her left breast. Her doctor told her not to worry; it was probably just a cyst. The day after her bridal shower, she went for a mammogram. The radiologist was alarmed and told her it had to be removed. She was scheduled for surgery the week of Labor Day.
The biopsy results were not good: triple negative breast cancer. We did not know it was the deadliest type. The surgeon and oncologist insisted it had been caught early. There were no signs of cancer in her lymph nodes. She would begin chemotherapy after her wedding. They were certain she’d be okay.
Because we are Ashkenazi, genetic testing was recommended. More bad news: She was BRCA2 positive. They tested me. Same result. We were in shock. I had no known history of breast or ovarian cancer in my family. But that fact came with an asterisk.
My mother was adopted. She died of a rare cancer in 1991 at age 62 – cholangiocarcinoma, or bile duct cancer – prior to the discovery of the BRCA mutations. It was not even on the radar as a BRCA-related cancer until recently, but it falls in the same category as pancreatic cancer. I had found my mother’s entire maternal family in 1997. Neither my grandmother, who died at 86, nor her two brothers and six sisters had cancer. They lived long lives. I was lulled into complacency.
Fatefully, I knew very little about her father’s family, whom I had found but not kept in touch with. I soon learned, however, that my third cousin on that side was BRCA2+ and had been diagnosed with breast cancer a few years earlier but was doing well. Her mother, also related to me, had both breast and pancreatic cancer, but lived into her 90s, succumbing to the latter. An uncle died of prostate cancer.
With this knowledge, both my daughter and I opted for double mastectomies and oophorectomies. Why test fate, we thought. We already knew the insidiousness of this disease and wanted to prevent it from happening again. The pathology reports on my breasts and ovaries were negative and Sheryl had no sign of any other cancer on her reports.
Despite the doctors’ optimism, chemotherapy and a year’s worth of clear tests, my daughter’s cancer advanced. The following fall after her diagnosis, she felt pain in her side. An ultrasound found cancer “all over” her liver. The next two years were filled with ups and downs, surgeries, many visits to the ER and ultimately, metastasis to her brain and spinal fluid from which she could not recover. After a truly valiant fight, she died Aug. 18, 2015. She was 34.
During her illness, Sheryl begged her Jewish friends to get tested. At least one did. She learned she was BRCA1+ just after Sheryl died. She has since had risk-reducing surgeries to remove her breasts and ovaries. She says Sheryl saved her life.
Saving lives is what Oneinforty is all about. My daughter wanted me to continue her efforts to raise awareness. I have organized two public programs so far and now distribute Oneinforty’s literature and talk it up to my physicians. I present genealogy programs on my search for my mother’s biological family and always explain why knowing your family’s medical history is so important.
I discovered that my mother’s biological father also died at 62 of a digestive cancer similar to my mother’s. I am quite certain he was the carrier. I now get annual pancreatic cancer screenings.
I support population-based genetic testing for all men and women of Ashkenazi heritage, whether it is 2 percent or 100 percent of their DNA. One in 40 is too high a risk to ignore, or to say, “I don’t want to know.” I believe we should all test, not just for ourselves, but for our children, our siblings and other family members. Saving a life is a fundamental value of Judaism.
I am certain my daughter would be alive today if just one doctor had suggested I be tested for BRCA – not because of my medical history, but because of a lack of it. Knowledge is power. What you don’t know can hurt you.
Copyright © 2019 by Sandy.