My Cancer Story: Clinical Trials

Standard

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.

Katie

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!

29 responses »

  1. I hope this all benefits you as well as research and others. I have not participated in clinical trials. But I know thousands of children participated in the initial polio vaccine trials. And now we hear that polio virus is being successfully used to treat cancer. Have you heard anything about that, Barbara? The research is being done at Duke Medical School.

    BTW – you don’t look like a long giant. But you do have great legs!

  2. Good for you! I have participated in 7 studies about breast cancer. Each one I always think the research may help another women to understand, cope, survive, or cure .

  3. Kenny did a clinical trial that only included extra films from his MRI scans. They were trying to determine the most effective ways to improve MRI technology. It kind of surprised me that he went along with it, he was so claustrophobic. Turns out, he slept through it all.

  4. I’ve never had the chance to participate but i’m glad you did. You are helping push back against cancer!

  5. I participated in a clinical trial for melanoma. It was not very involved…only answering 25 questions about where I grew up and how many sunburns I had as a child and young adult. Also allowing the sample to be used for research. I felt it was necessary to help anyway that I could and I am glad I did.

    • Yes. It really does make you feel happy to help. Gosh, I had so many sunburns. Such a different time. I remember putting aluminum foil on record covers and using it as a reflector (and baby oil on my face). Can you imagine we (and our parents) were that clueless? Both of my parents had skin cancer. I am hoping I stopped burning in time but I do wonder what is ahead. Glad you’re okay!

  6. Thanks for participating and sharing. I haven’t yet but would be willing I think. The more we learn, the closer we get to helping somebody and we’re all in this together.

  7. I am part of an on going trial for cancer research.
    I live in Atlantic Canada where cancer has the highest rates in Canada. I have not had cancer, but am surrounded with family and friends who have.
    Initially my file is set up by giving “samples”, completing questionnaires, etc. then I am followed for 30 years and data is compiled.
    For me the trials are a positive experience. I truly hope I am helping in some way.

      • Many types of cancer.
        The researchers are studying environmental factors, genetics and lifestyle. They try to determine why some folks have cancer and others do not; but ultimately their goal is improved treatment and of course, eradication.

  8. Good for you for participating in these trials. It helps to think others might benefit as a result.

  9. Thank you for sharing this – you did a great job explaining everything. I have always signed up for clinical trials when I could. I did one related to birth control pills a long time ago, and more recently I did one related to bone density (that was great b/c I got a bunch of free bone scans and there was payment too). Your post helped me connect the dots more directly of how a study like this can help other cancer patients. Thanks again.

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