NORTHWESTERN (US) — Better follow-up programs are needed for cancer survivors, who often suffer mild to severe pain, fatigue, and memory loss as long as five years after treatment has ended.
“We were surprised to see how prevalent these symptoms still are,” says Lynne Wagner, associate professor of medical social sciences at Northwestern University. “This is one of the first looks at what’s really happening for survivors in terms of symptoms and treatment among community-based treatment settings across the U.S.”
The persistent pain in survivors who are cancer-free and no longer receiving any treatment is particularly puzzling because good treatment exists.
“It seems we haven’t come a long way in managing pain despite a lot of medical advances,” Wagner says. “This is eye opening. It tells us we need to be better in clinical practice about managing our survivors’ pain.”
Cancer survivors seem to slip through the cracks in healthcare in terms of getting treatment for their pain and other symptoms.
“We don’t have a great system to provide care to cancer survivors,” Wagner says. “Cancer survivors are left trying to put the pieces together to find optimal care. They ideally need to see someone who is knowledgeable about the long-term affects of treatment.”
The study, presented at the American Society of Clinical Oncology annual meeting, included 248 survivors of breast, colorectal, lung and prostate cancer. The survivors were primarily female and white, most were more than five years post-diagnosis and had been treated in community settings—where 80 percent of people with cancer are treated in the United States—rather than academic medical centers.
The most common symptoms reported by survivors were fatigue (16 percent), disturbed sleep (15 percent), cognitive difficulties (13 percent) and pain (13 percent.)
Survivors need education programs for transitioning from treatment to life as a cancer survivor, and this education should include skills for managing these difficult and chronic symptoms, Wagner says. Medical providers also need to be educated about survivors’ lingering symptoms.
“It is acceptable for someone actively going through cancer treatment to have pain medications, but when they transition to being survivors, that acceptance goes away,” Wagner says. “If they ask for pain medication again, doctors may worry that they are getting addicted.”
A better ways to address problems is necessary, especially sleep issues, fatigue, and lasting difficulties with memory and concentration. Non-drug interventions for improving sleep are effective and should be tailored specifically for cancer survivors.
Exercise is the most effective weapon against cancer-related fatigue, but it’s challenging to adhere to an exercise regime when you don’t feel well. “We need to see how we can be more effective in promoting physical activity among survivors,” Wagner says.
The study documented treatment interventions for participants’ symptoms and then repeated an assessment of the symptoms four weeks later. “We generally found the same severity of these symptoms one month later, suggesting they tend to be chronic.”
The study was funded by the Eastern Cooperative Oncology Group, which is funded primarily by the National Institute of Cancer.
More news from Northwestern University: www.northwestern.edu/newscenter/index.html