As the co-author who has cancer and has participated in clinical trials, I tend to see the patient/participant side of clinical trials more than the medical side. I have participated in three clinical trials and my life has changed in ways not built into the study plan.
I’ll explain. My first trial, more than 15 years ago, was a prostate cancer prevention study. It was a double blind placebo study—half the men got an experimental medicine and half got a pill that was neutral (sugar pill). Nobody knew who got which pill—not the participants, doctors, or nurses. It turns out I took a placebo for several years. My PSA (a potential marker of prostate cancer) was in the normal range throughout the study.
At the end of the study I was offered a free prostate biopsy and agreed to have it. A prostate biopsy takes tissue samples from your prostate by injecting hollow needles through your colon and into your prostate. I never said it was fun. The bottom line was: even though my PSA was normal, the biopsy found a rather large and fast growing tumor. I started treatment shortly thereafter. Without the biopsy it may have been a few years before I was diagnosed, and possibly at a much later and more dangerous stage.
In a second clinical trial, everybody took the experimental drug and it didn’t seem to work for anybody. No harm—no foul.
My third trial was a six month strength building program for men with prostate cancer and their spouses—10 couples in our group.
My wife and I lost weight and increased our strength. That’s a good outcome. But the unexpected benefit of the class was that we formed a rapport and friendship with the other participants. In the three years since the end of the study, our group has met numerous times to visit, eat, sip wine, and provide mutual support. This self-selected support group (we call ourselves the geezers) has become a positive and caring force in my life.
My wife and I lost weight and increased our strength. That’s a good outcome. But the unexpected benefit of the class was that we formed a rapport and friendship with the other participants. In the three years since the end of the study, our group has met numerous times to visit, eat, sip wine, and provide mutual support. This self-selected support group (we call ourselves the geezers) has become a positive and caring force in my life.
So although none of the studies I participated in cured, stopped, or even slowed my cancer, I am grateful for what I consider beneficial and possibly even lifesaving experiences influenced by, but not directly caused by, the clinical trials.
Will you find unexpected benefits if you participate in a clinical trial? There’s no way of knowing‑‑but it could happen. A large majority of people who participate in cancer clinical trials report that they would gladly participate in another one.
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