Shortly after I was diagnosed with endometrial cancer, I received a letter from UNC Hospital inviting me to participate in clinical research trials. At my pre-surgery appointment a week later, here’s what I said yes to:
- I agreed to have my tissue sent to a cancer tissue bank. I like knowing that those nasty cells may help find a cure down the road.
- I allowed my surgeon to inject dye to detect further cancer in my lymph nodes. This dye is now used effectively in breast cancer patients but has not yet been approved for endometrial cancer surgery. My surgeon told Cliff afterwards that the dye enabled her to more quickly figure out that my cancer hadn’t spread. Yes!
- I said okay to participating in a study that accessed my quality of life before and after surgery. I answered questions on my happiness levels in lots of categories (and I love happiness research!). Some of the questions would have made me blush had I been speaking in person to the young man asking them. Luckily, these were phone interviews. I ended up with forty dollars worth of gift cards from Walmart. I spent my gift cards with gusto, although I can’t remember what I bought. (Some clinical trials offer monetary or other compensation; most do not.)
- The last study will measure my legs over a two-year period. I’m at danger for lymphedema as a result of the lymph node removal. The measurements assess leg swelling. The disease sounds awful (and doesn’t come on until at least a year post-surgery). The photo below makes me look like a long giant, which I am not, I promise.
Here’s Katie, the darling research nurse heading up the study. I’m one of 75 women participating.
Blog reader Cheryl, a clinical research coordinator at a local medical center, is pleased I agreed to participate in clinical trials. I asked her to send us a few lines explaining their importance.
Cheryl writes: Clinical trials are the only way we can move forward with treating cancer. Studies can be as simple as observation or questionnaires about your symptoms. Some trials take an agent already approved for a disease and modify the treatment time or frequency to see if it’s as effective as the approved regimen, while others introduce a completely new agent to tackle the disease in a different way than the current standard. The clinical trials that are active now shape the standard treatment one, two or ten years from now. They can help the patient make it to the next milestone in life: a birth, a graduation, a wedding, another birthday, remission, recovery…. or in some cases, to the next available clinical trial. You’ll never be pressured into joining a clinical trial, and can withdraw from a study at any time. Trials may or may not help your condition, but they could help someone you know in future.
Me again: I was happy to agree to the trials. Had they involved multiple trips to the hospital or experimental drugs, I might have declined. These clinical trials were easy and interesting to do, and they lifted my spirits as they gave deeper purpose to my cancer experience.
What about you? Have any of you had good or bad experiences participating in clinical medical trials? Do tell!