by Rabbi Jon Adland
My first awareness of cancer in my family came with the death of my mother’s mother. I was in Israel studying at Hebrew University at the time and wasn’t totally aware of all that was going on. We didn’t talk about these things. Many years later, I discovered that she had ovarian cancer. More recently, I learned that other family members coming down through all parts of the family tree have had and, unfortunately, died from cancer. My younger sister had breast cancer, my brother had prostate cancer, and my mother had uterine cancer; we also can add to this a first cousin on my father’s side who has battled and continues to battle cancer. Although I first thought cancer wasn’t a part of our family legacy, I have learned how wrong I was.
When my younger sister was diagnosed, she decided to do genetic testing to determine if she carries a BRCA mutation. In fact, she is positive for both BRCA 1 and BRCA 2 mutations. Because there is cancer on both sides of the family and because our parents were never tested, we didn’t know exactly from whom she received the mutations. My older sister tested positive for BRCA 2. Finally, a couple of years ago, my brother was tested and came out without any mutations. Seeing how much my brother and I resemble each other, I figured I wouldn’t be a carrier of either of these mutations either. After moving to Canton, OH, in the summer of 2011, I decided it was my turn and had the requisite meetings with a genetic counselor and a blood draw for the genetic test. A month or so later, I went back to the wonderful team at Aultman Hospital to learn the results. Though I was shocked, I learned that, like my younger sister, I, too, am a carrier of both BRCA 1 and 2 mutations.
The team at Aultman was wonderful. They carefully explained everything to me, including the increased risks for certain types of cancers and what I need to do to help myself. Having both mutations increases my risk for prostate cancer, breast cancer, pancreatic cancer, and melanoma. (Interestingly, my brother, who doesn’t have any mutation, still had prostate cancer – which, I am told, most men eventually will get if we just live long enough.)
So what do these mutations mean for me? To be honest, there isn’t much I can do to avoid pancreatic cancer. The other three I can stay on top of by doing a few things. I am not a sun worshipper, but I do work in the yard, fish when I can, and spend a bit of time outside. I should be more vigilant with sunscreen, though I will admit I am not. As to breast cancer, I try to do monthly breast exams, looking for lumps. The team at Aultman didn’t recommend mammograms at this point, but given my brother’s cancer and my mutations, prostate screenings with regular PSA tests are definitely a part of my regimen. That is about it.
My lifestyle hasn’t changed since my diagnosis, but my awareness of my genetic makeup has. I had a conversation with people at FORCE – Facing Our Risk of Cancer Empowered – a grassroots organization solely devoted to individuals and families at risk of hereditary cancers related to the BRCA mutations, and tried to find male support groups, but I discovered that most of the energy is on women. Women who have these mutations are at much more risk than men, so I “get it” – though I did tell the folks at FORCE that I would be pleased to be a male spokesperson for them if they needed one.
I also spoke with both of my adult children and encouraged them to get tested, though because health insurance and life insurance are potentially at risk if it is learned that they have the mutations, I left these decisions with them. I will continue to encourage them at some point.
I will not let these mutations stop me from being me and doing what makes me happy, but I do realize that the home run I hit in inheriting both a BRCA 1 and a BRCA 2 mutation may someday take a toll on me. I hope not – but if they do, I will be prepared.
Rabbi Jon Adland is the spiritual leader of Temple Israel in Canton, OH.