Howard's "I am Oneinforty" Story

I am Oneinforty. I have the BRCA2 gene mutation, which was detected after testing in 2016. I am seventy-one years old, married to the same woman for 43 years, the father of two children and two grandchildren. I was first diagnosed with prostate cancer in 2008, after five years of a rising PSA and negative biopsies. Each time I had a biopsy result my doctors happily told me I did not have prostate cancer. In those years there was no known connection between prostate cancer and BRCA gene mutations.

When my cancer was finally diagnosed in 2008 and my tumor was located, it was already a substantial size and had likely extended beyond the prostate gland. Had I known I was BRCA positive and the implication of that, I would have been much more aggressive about trying to find the tumor, because clearly I had prostate cancer as early as 2003. I could have had a surgical biopsy to try to find the tumor, but without the knowledge of the BRCA mutation, there was no reason to do so.

My cancer recurred in 2015, which makes me stage four and I have progressed through several medications that had only limited effectiveness. When you have BRCA2 prostate cancer, most conventional drugs fail quite rapidly and these tumors are aggressive and dangerous. Despite the fact that most people think that prostate cancer is a “good” cancer to have, 27,000 men a year die of prostate cancer in the US, and from my limited research, at least 20% of the men who die of this disease are BRCA-positive. As I write this I am entering a clinical trial with a PARP inhibitor, which is a medication that targets tumors with a BRCA gene mutation, and I am optimistic that with this medication, which has only recently been approved, I still have years to live. But if I had the knowledge I have now back in 2003, I could have easily been cured of my cancer at that time when the first signs of it were evident.

It is clearly a life altering decision for a healthy person to be tested for BRCA gene mutations. I have had many conversations with members of my family about testing over the last two years, trying to gently persuade them to be tested. It takes time to absorb the implications of testing and even more time to absorb a positive result. I believe that shortly my immediate female relatives will all be tested. I am grateful for the knowledge I have of my BRCA status and hopeful that this knowledge will save the lives of my sisters, my daughter, and my two female grandchildren.