Why I chose not to get tested

I first became aware of the existence of the BRCA genetic mutation when my father was diagnosed with prostate cancer at the age of 60, about 25 years ago. Our family was informed about the existence of such genes, and individual testing was suggested, but I chose not to be tested. I didn’t see the point in knowing if I was at increased risk for prostate cancer. My brother chose to be tested. I can’t remember if my father was tested or not. At the time of my dad’s cancer diagnosis, he had missed a year of getting his PSA tested and when it finally was tested the following year, he was sent in for additional diagnostic testing which resulted in a prostate cancer diagnosis. At that time, the doctors felt that his cancer had spread to the point where surgery would not have been an effective treatment.

He was given about 5 years to live. He passed away about 9 years after that diagnosis after receiving various treatments. I then forgot about the BRCA genes and prostate cancer for about 13 years, though I dutifully got my DRE and PSA checked every year. When I was the same age as my father was when he was diagnosed with prostate cancer, I was diagnosed with it. Twelve of the 15 samples taken during my biopsy were cancerous. It was determined that my stage II cancer was aggressive and I received a robotic prostatectomy a few weeks later. My pathology showed that my cancer had progressed to stage III by the time I had the surgery.

It was at that time that I remembered about the BRCA genes and started to assume I was positive because my father died of prostate cancer, and I had aggressive prostate cancer. In fact, I was sure I was positive, because upon further investigation of my father’s family (7 siblings), it turned out that many of them had been tested for the BRCA genetic mutation. A few positive cases had been found but not as many as one would think given the number of prostate and ovarian cancer cases in our family. On my father’s side, my Zaida and I, two cousins and at least two uncles all had prostate cancer. Some of them passed away from it.

At that point I decided to get tested for the BCRA mutation because I have two sons and I wanted to know if they were at increased risk for prostate cancer. I got tested and was surprised when the results showed I was not in fact a carrier of the genetic mutation, but happy that I won’t pass it on to my sons. Do I regret not getting tested years ago? No, because it wouldn’t have made any difference in my case. I was on increased surveillance as it was because of my father.

Should you get tested? I can’t say yes or no, however it behooves everyone to lead a lifestyle that reduces their risk of all forms of cancer.

-Anonymous aggressive prostate cancer survivor, aged 63, Vancouver, BC