In 2014, I was diagnosed with endometrial cancer. A scary heath diagnosis can make you turn inward. You become focused on saving your own life.
A few days before my first appointment with my oncologist at UNC Hospital, I received a letter explaining that I would be invited to join clinical trials. The letter talked about the importance of clinical trials and the role UNC, a research hospital, plays in them.
My first reaction was annoyance. I didn’t need anything else to think about, and I didn’t want to participate in studies that might be time consuming and inconvenient. Wasn’t it enough that I had cancer and was about to undergo major surgery?
At my hospital appointment, I was introduced to the clinical trials coordinator. He explained each trial to me clearly and told me exactly how I would participate. My attitude shifted, and I readily agreed to participate in four trials.
- I agreed to have tissue from my tumor sent to a cancer tissue bank.
- I allowed my surgeon to inject dye to detect further cancer in my lymph nodes. Five years ago, the dye was used in breast cancer surgery, but was undergoing study for its use in endometrial cancer surgery.
- I said yes to participating in a study that accessed my quality of life before and after surgery.
- The last study measured my legs over a two-year period. I was in danger for lymphedema as a result of the lymph node removal. The measurements assessed leg swelling.
I’ve recently learned that older adults (especially those over 65) are under-represented in research studies. This is especially disconcerting since older adults have a large number of health challenges, and many medications are developed to help them in particular.
My friend Kristen Sawyer spent 25 years as as a clinical trials research coordinator. I asked her why older adults are often excluded from studies. She writes: “By the time a person is old, they often have so many pre-existing conditions that they don’t meet the eligibility requirements to participate.” Older adults may be on medications that can affect a trial’s results as well.
Kristen reported that cognition and hearing difficulties can complicate a patient’s ability to understand the trial and give consent. And adult children sometimes come into the situation with their own biases and discourage their parent from participating.
Happily, health advocates are working to change the number of older adults in clinical trials. In an article in the New York Times, Paula Span writes that “Critics of age exclusion had reason to celebrate in December, when the National Institutes of Health issued new policy guidelines for the research it funds. Starting next January, grant applicants will have to explain how they intend to include people of all ages, providing acceptable justifications for any group they leave out.”
Clinical Trials in Older Adults is on online booklet published by the National Institute on Aging that gives excellent information on clinical trials. I especially like the set of questions on Page 9 that you can bring along to your health care provider. The questions will help you figure out if you should agree to a specific trial.
Participating in clinical trials was easy, interesting, and most of all, helped give deeper purpose to my cancer. As my friend Dr. Sean Bailey, a project leader in Duke University’s Department of Surgery, said to me, “Clinical trial participation can have an impact for generations to come.” And that thought makes this grandmother very happy!
I just celebrated five years cancer-free. What a happy checkup that was. You can read my cancer story in a series of post I wrote for Friend for the Ride, archived above under “Endometrial Cancer.”
I received compensation from CureClick to write this post. CureClick is committed to supporting patients, caregivers, patient advocates and life science companies through education about health, science and clinical trials.