Why I Keep Telling My Family’s Breast Cancer Story
Although I tell my hereditary cancer story again and again, it never gets old. There are always new people to hear it, and its potential to change the trajectory of just one person’s life makes the telling and the retelling critically important – not only during October, which is National Breast Cancer Awareness Month, but at every season of the year.
In the mid-1990s, when my maternal aunt was in her late 60s, she was diagnosed with post-menopausal breast cancer. A single mastectomy and chemotherapy followed and thankfully, she’s a sprightly octogenarian today.
Grateful, I didn’t give it another thought.
A little more than a decade later, when my mom was in her 70s, she, too, was diagnosed with post-menopausal breast cancer. She opted out of chemotherapy, claiming that at her age, she didn’t want to disrupt her quality of life for what she did not perceive as sufficient benefit. A lumpectomy and more than 30 daily radiation treatments followed, and, with her treatment complete, she was fine… until she wasn’t. Fifteen months after her initial diagnosis, excruciating back pain was quickly attributed to a fractured pelvis – the result of triple-negative metastatic breast cancer.
During her seven weeks in the hospital, cancer ravaged my mother’s body in horrific ways. Sadly, her oncologist never talked to us about testing her for a BRCA mutation – inherited genetic flaws that cause predispositions to breast, ovarian, prostate, and pancreatic cancer, among others. They are 10 times more prevalent among Ashkenazi Jews than in the general population.
When her doctor finally conceded that my mother wasn’t going to get better, we followed her wishes and spent 11 days together as a family in hospice until she died peacefully and pain-free over Memorial Day weekend in 2010.
From the depth and exhaustion of my grief, I dug up a random memory of a connection between Jews and breast cancer. That summer, my sister and I met with a genetic counselor before testing for the three Ashkenazi Jewish founder mutations.
Although my sister’s results were negative, mine were positive for a BRCA2 mutation. Suddenly, at 47, I was part of a club I never even knew existed.
I had a hysterectomy and oophorectomy within months, but I was still unable to wrap my head around a mastectomy. Instead, I lined up what seemed like endless medical appointments for breast surveillance, beginning with a baseline MRI. The results, the oncologist said, “were not perfect.” An ultrasound, another MRI, and a needle-guided biopsy all followed, convincing me I did not possess the risk tolerance necessary for surveillance.
Three months after that biopsy, I went ahead with a prophylactic bilateral mastectomy with microsurgical reconstruction using my own abdominal tissue. I consider it to be a second (posthumous) gift of life from my mom.
Several years ago, my aunt finally tested for the mutation. Not surprisingly, she’s positive. One of her sons is negative; the other has yet to test. (In hindsight, it’s no surprise that her father died from metastatic prostate cancer in the mid-1980s, before scientists had even uncovered the BRCA gene mutations.)
Although our family’s story might end there, it doesn’t.
In August of last year, my BRCA-negative sister was diagnosed with breast cancer, found on the yearly sonogram that she’s insisted on having since I tested positive. Since then, she’s gone through 16 rounds of chemo and a double mastectomy in lieu of radiation, even as she continues to receive regular infusions of cancer-fighting antibodies. Thankfully, her illness seems to be quickly fading into the rearview mirror.
It is here, God-willing, that our family’s BRCA story truly ends. Nonetheless, promoting awareness about these mutations and – as is the case in our family – how elusive they can be remains an important part of my life.
For several years, I have volunteered for FORCE: Facing Our Risk of Cancer Empowered, and I speak and write frequently on this topic, ever hopeful that sharing my family's experience might save another family from the anguish, pain, and loss we suffered because we didn’t know – until only recently – that we are a BRCA family.
As noted above, BRCA mutations among Ashkenazi Jews – the majority of North America’s Jews – are 10 times more common than in the general population. If you suspect the possible presence of a BRCA mutation in your family, you may wish to consider genetic counseling and testing, both of which should be done in consultation with a certified genetic counselor, a specialist trained to assess personal cancer risks and help determine appropriate risk management strategies. The National Society of Genetic Counselors can help you find genetic professionals in your area.
For more information about BRCA mutations and the Jewish community, visit FORCE: Facing Our Risk of Cancer Empowered a national non-profit organization devoted solely to providing resources and support to individuals and families affected by hereditary cancer.