Info all Articles

Jane E. Herman, a BRCA2 mutation carrier, is the writer and editor at the Union for Reform Judaism. She also volunteers as an Outreach Coordinator in New York City for FORCE: Facing our Risk of Cancer Empowered and blogs regularly about her BRCA journey and other slice-of-life matters at JanetheWriter Writes…

With Halloween candy lining the aisles in my local drugstore just as kids are starting back to school and Christmas tinsel and lights not far behind, it should come as no surprise that pink yogurt lids have already made their annual debut in my grocery store’s dairy section, and pink pens are on sale at Staples.

Whoa…not so fast!

If you rush from today straight into October, you’ll miss National Hereditary Breast and Ovarian Cancer (HBOC) Week, which bridges Ovarian Cancer Awareness Month in September and Breast Cancer Awareness Month in October. HBOC Week was created in July 2010 when Rep. Debbie Wasserman Schultz (FL-20), who herself has been personally affected by HBOC syndrome, introduced House Resolution 1522, designating the last week in September as HBOC Week and the last Wednesday of the month as National Previvor Day.

This year, HBOC Week begins on September 29 and runs through October 5, with National Previvor Day on Wednesday, October 2.

As it does each year, the specially designated week honors individuals and families at significantly increased risk of hereditary cancer because of family history or the presence of a known BRCA (BReast CAncer) gene mutation. These mutations inhibit the body’s ability to fight rapid, unregulated cell growth and suppress tumors. (Here’s information about the basics of BRCA mutations.) HBOC Week also recognizes survivors of breast and/or ovarian cancer, as well as previvors—those who are at risk for these cancers, but remain disease free. In recognition of HBOC Week and the estimated 750,000 BRCA mutation carriers in this country, the majority of whom do not know they are carriers, let me give you a bit of a previvor’s perspective.

Each of us comes to the HBOC table with questions and views based on our own family history and where we happen to be in our own lives. In some families, ovarian cancer prevails; in other families it’s breast cancer. In still others, it’s both. Being a previvor is a blessing—and a curse—and each one of us takes a different path and a different timeframe to reach the decisions that are right for us. Some of us know immediately what we’re going to do. Others take months or even years to research and ponder the options before we reach our decisions, but even then may not act on them right away. Some of us have mastectomies prior to having children, deciding it’s better to forego breastfeeding knowing that we’ll be around to watch our children grow up. Oth-rs opt to complete our families quickly so we can move on to the prophylactic surgeries, while still others choose surveillance for years and years, and, if we’re lucky, don’t ever see the inside of an operating room. Some of us remove our ovaries and not our breasts, others do just the opposite. Our choices and our decisions are as individual as we are.

My Previvor Experience

My own family history unfolded in such a way that I was 47 before I learned I carry a BRCA mutation. Thus I was spared the fertility and childbearing issues that my younger BRCA sisters confront regularly. Within four months of receiving my test results (which was just after quickly losing my mom to triple negative breast cancer caused by a mutation she didn’t even know she had), I had a complete hysterectomy. Although the surgery and recovery were uneventful, I do still deal with the troubling effects of surgical menopause—nearly three years after the fact.

Initially unable to wrap my head around a mastectomy, I opted for surveillance to manage my breast cancer risk. That plan, however, quickly fell by the wayside when a baseline MRI showed a number of things that, according to the medical oncologist in charge of my monitoring, “weren’t perfect and needed further study.” The following week, I had an ultrasound, another MRI, and a needle-guided biopsy, all of which, thankfully, showed no evidence of cancer. Nonetheless, so many tests and so much anxiety in such a short span of time convinced me that I couldn’t live the rest of my life with the potential for a similar ordeal every six months. Within a few weeks, I had consulted a breast surgeon and a plastic surgeon, and had scheduled a prophylactic mastectomy with microsurgical reconstruction using my own abdominal tissue. The process entailed 12 hours of surgery, eight weeks of recovery, and a complication—necrotic tissue that had to be excised, leaving a sizable scar that’s still healing today, more than two years later. Nonetheless, I am pleased with the results, satisfied with my decisions, and extremely relieved that the threat of neither breast nor ovarian cancer hangs over me. At the same time, although my scars—both physical and emotional—fade a little bit each day, I’m not sure they’ll ever disappear completely.

This week, as we transition from Ovarian Cancer Awareness to Breast Cancer Awareness, instead of racing down store aisles in search of yogurt in a container with a pink lid, take a few minutes to acknowledge the many families—including some you likely know—whose members are at risk for hereditary cancer, remembering the unique struggles, challenges and triumphs we face as part of the HBOC community.