Deciding If Participating in a Cancer Clinical Trial is Right For you
Reading an article about the shortage of participants for cancer clinical trials got me to thinking about whether people who’ve had cancer, like us, have any special responsibility to participate. I don’t think so, but here’s what my own personal experience has been.
When I was diagnosed with breast cancer in 1996, several oncologists who I consulted (yes, I had six second opinions at the leading research hospitals in the northeast, including Georgetown, , Johns Hopkins, and Sloan Kettering) encouraged me to participate in their ongoing trials. In the end, however, I declined, because I wanted to control my own treatment plan. I didn’t suffer any guilt over it. I was trying to save my own life. The needs of future cancer patents weren’t paramount in my mind. No need to apologize for that.
Fast forward to six years later. I was done with my five years of tamoxifen. My oncologist suggested that I participate in a clinical study of aromatase inhibitors. After conducting some research on my own, I decided it was a good idea. If I got the real drug, it could turn out to be a cutting edge treatment. If I didn’t get the real drug, nothing was lost. Again, I was thinking of myself, although I recognized that participating in the study was performing a social good for future cancer patients. But let me make clear that self-interest was my primary motivation.
I was pretty sure from the outset that I was getting the real drug. I had joint pain for a few months, which is a common side effect. A few years into the study, when researchers discovered the wonderful properties of aromatase inhibitors for preventing recurrences, the study was unblinded and disbanded. Yes, I had been taking the drug for a few years by then. At that point, also at my doctor’s recommendation, I switched from the type of aromatase inhibitor I had been getting for free, from the study, to another type that I had to pay for, which is very expensive. If I didn’t switch, I could have gotten the other drug for free for as long as the study was supposed to continue, which I think was five years. When I switched, I also experienced a few months of joint pain. I’m still taking that drug, Femara, because the medical community hasn’t decided yet how many years is optimal.
So, while my experience being in a clinical trial has been positive, and I’m glad I did it, I think everyone has to decide for themselves, based on their own self-interest. And that kind of thinking is not going to solve the vast shortage of clinical trial participants in the U.S. So drug companies and the medical community are going to have to come up with new ways to serve people’s self-interest to get them to volunteer. Of course, in some ways, they already do that because being in a study generally guarantees you a high level of care and follow-up.
What do you think? Tell us in the message boards.
Published On: July 26, 2006