Cancer advocates are working to make the process of finding and understanding trials less intimidating.
Craig Lustig will never regret participating in a research study in the early 1990s, but neither will he remember the episode fondly. For starters, he didn’t even know he was in a trial. At the time of diagnosis, he was 27 and living in New York City. He was referred to a doctor who told him his brain tumor was so rare he only had one chance to conquer it.
He consented to chemotherapy provided through a clinical trial, he says, after the oncologist told him that without it, his only option was radiation to the brain and he would suffer cognitive loss.
But 10 months after the trial ended, his cancer returned. He consulted with another doctor and eventually received low-dose radiation and a different type of chemotherapy. Lustig has now been cancer-free for almost 20 years.
His cancer ended his career in marketing and launched his career as a patient advocate, first for the Children’s Cause for Cancer Advocacy, and now for the National Cancer Institute. He and others now work to make clinical trials as friendly as possible.
For starters, cancer advocates want the process of finding and understanding trials to be less intimidating. Granted, you can search the main registry for trials—www.clinicaltrials.gov—to find out about all of the studies in your area on a particular cancer. But what if this is your second round of treatment? What if you’re taking some other medicine? Would you still qualify? It’s not always clear.
So some groups are making the information easier to find and decipher. For example, www.breastcancertrials.org launched in California in 2005—and nationally in 2008—to help match breast cancer patients with clinical trials. The idea was born in 1996, after two newly diagnosed women in the San Francisco Bay area developed a friendship and became united in their quest to obtain information about getting treatment through a clinical trial.
“They eventually did find a trial, but it was very difficult,” says BreastCancerTrials.org program director Elly Cohen, PhD, of the University of California, San Francisco’s Center of Excellence for Breast Cancer Care. They brought the idea for the website to UCSF, which then obtained support from patient advocates and the NCI. The website, which Cohen hopes will be a model for others, allows women not only to find a trial but also to know how it might advance cancer treatment and whether it is right for them.
Lustig hopes this effort and others will make clinical trials less intimidating to patients who suddenly find themselves in an unfamiliar world of science and research. “You’re living in this space where you’re expected to absorb a lot of information,” he says. “It is really traumatic. But then you’re supposed to be making rational decisions about what to do next.”