My mother was a breast cancer survivor for 26 years. It was discovered that she carried the BRCA genetic variation. In women, the gene increases the risk of breast and ovarian cancer. In men, it increases the risk of breast and prostate cancer. When Mum was identified with the variation the familial cancer clinic contacted our family to alert us that we may have an increased risk of cancer.
We found that the gene had been passed down through her family, including to my brother and myself.
My brother and I joined the clinical trial partly as a tribute to Mum. Mum had benefited from research that others had taken part in, and Mum and my sister had both taken part in a clinical trial. We also joined partly because we felt a social responsibility to help others in the same position. This is a worldwide trial that will go a long way toward developing more accurate tests for prostate cancer.
The trial also provided excellent care. By being part of the trial I ensured I was being regularly and thoroughly tested for prostate cancer.
My involvement was fairly easy — an annual interview, blood and urine test. While the clinic was about an hour’s drive away from home, it was no problem to go once a year.
The staff at the clinic were gentle, supportive and informative. They had a very holistic approach to patient care — they were interested in how Mum’s death had affected me, and my mental as well as physical health. My care was about much more than the fact that I have a genetic variation. Information about my care and my test was also fed back to my GP so my own doctor was kept in touch with everything that was happening.
The best thing about the trial is what people like to call the ‘warm and fuzzies’, but really it’s more than that. I am a part of something that is contributing not only to my wellbeing but others in my situation. It’s a very positive feeling.
Would I recommend going in a clinical trial? Absolutely and unreservedly.
We all benefit from past medical research and the contributions of other people. We have an obligation to make a contribution ourselves. For a small commitment, we can bring about better medical care.
I have now finished my part in the cancer gene study, and have now joined another study for which I was qualified. So I guess that’s an endorsement too — having been in one trial I am willing to go on helping myself and others in more clinical trials.