The Treatment Option You May Be Missing

Why aren't cancer patients participating in clinical trials?

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
Jane Reese-Coulbourne found grape-sized lumps in her breast and underarm when she was 36. Within days, she learned she had stage 3B breast cancer and preoperative chemotherapy was recommended. At the time, Reese-Coulbourne was living in Columbia, Maryland, close enough to the National Institutes of Health to know that some kind of experimental treatment in the form of a clinical trial might lie within driving distance. She didn’t want to wait for a clinical trial as a last resort. She wanted it first.

Clinical trials are research studies that evaluate new treatments, combinations, and doses; better methods for diagnosing or preventing the disease; and new ways to improve quality of life for cancer patients. 

For Reese-Coulbourne, she volunteered for a clinical trial using previously untested doses of Adriamycin (doxorubicin) combined with three other drugs. “I wanted to take my best shot right up front,” she says.

She knew the trial was trying to push the limits on how much of the cancer medicine a body could safely withstand, and that she would be getting a lot of toxic drugs—all of which was fine with her. “I was in a ‘more is better’ mode,” she says. Even so, when she pressed the doctors for a prognosis, she was told the drugs might keep her alive, if she was lucky, another two years.

Twenty years later, Reese-Coulbourne is still here to talk about her clinical trial. The treatment melted the tumors, and radiation took care of what remained. She can’t be sure the clinical trial saved her life, but if her cancer ever does reappear, “I would do it again,” she says. 

Other patients aren’t so sure about getting their treatment through clinical trials, or are never offered the opportunity to join them. For many reasons—some more important than others—only about 3 percent of adult cancer patients participate in clinical trials, and the number has changed little since the days of Reese-Coulbourne’s diagnosis. Without clinical trials, cancer detection and treatment could not improve. Researchers have worked over the years to improve participation, yet so far nothing has made that figure budge. 

But today, the need to get beyond 3 percent has assumed a new urgency. To many longtime cancer researchers, medical science stands at the brink of meaningful change for cancer treatment, driven by an unprecedented understanding of the molecular genetics that enable tumors to develop and spread. Real progress, however, will be slow to reach doctors’ offices without the ability to test which experimental treatments work best, at which doses, in what patients.

“We’re finally beginning to have breakthroughs for what makes cancer tick,” says Joan Schiller, MD, of the University of Texas Southwestern Medical Center at Dallas, who chairs the thoracic oncology committee of the Eastern Cooperative Oncology Group, one of numerous oncology groups that organizes clinical trials. The pace of research today is being slowed, “not because of the lack of ideas or the lack of drugs; it’s the lack of people in clinical trials. It is a major impediment for us making progress in cancer treatment,” she says.

Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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