Study documents fatigue among cancer survivors

Wendy S. Harpham, MD, a general internist in Dallas, hasn't practiced medicine since 1993. She was initially diagnosed with non-Hodgkin's lymphoma in 1990 and is now undergoing her seventh round of treatment for a recurrence. But she didn't give up practicing medicine because of the cancer. She gave it up because of the persistent fatigue she has experienced during and after treatments.

"I've really struggled with post-cancer fatigue, and it's very different from the ordinary fatigue that people feel at the end of a long day," said Dr. Harpham, who has authored several books on survivorship, including Happiness in a Storm -- Facing Illness and Embracing Life as a Healthy Survivor. "I liked to go, go, go, but I have to pick and choose what I do."

Fatigue has been talked about for some time on an anecdotal basis as a challenge for cancer survivors, but the phenomenon is increasingly getting its due as a medical problem that requires attention -- sometimes years after treatment ends. Most recently, a study published in the Feb. 15 issue of Cancer found that just over a fifth of women who survive breast cancer had persistent fatigue as long as a decade after their cancer had been considered cured. About a third were fatigued at some point in the 10 years after treatment.

"Fatigue is an increasingly important issue in survivorship, and women may still be complaining of this many years later," said Patricia A. Ganz, MD, one of the authors and director of the Division of Cancer Prevention and Control Research at the Jonsson Comprehensive Cancer Center, University of California, Los Angeles. "We're talking about a small segment of survivors, but it's a real entity. [Women] will tell you they just never bounced back afterwards."

This study was praised for giving scientific confirmation that long-term fatigue in this patient group is a real problem.

"The study is important," said Harold A. Harvey, MD, an oncologist and professor of medicine at Penn State University College of Medicine in Hershey. "We're quite aware of the problem during treatment and a short time after. I would not like for patients to feel that it's inevitable, because the majority do well, but this documents the presence of fatigue in a minority of patients that can persist for quite a long time."

Rooting out the trigger

The study was particularly praised because it suggested possible interventions. The data indicated that depression or cardiovascular disease could play a role in its development, and those who care for long-term survivors say this points out the need to aggressively root out a cause for the fatigue and treat, if possible.

"The fatigue is a real problem," said Regina Benjamin, MD, a former AMA trustee and a member of the Institute of Medicine's Committee on Cancer Survivorship. "We should be looking out for it and take it very seriously."

Experts note, though, that not all causes can be addressed. This study implicated the intensity of the therapy, but many said it is not yet time to alter treatment choices based on fears of fatigue a decade down the line.

"You need to treat the cancer. It's not a reason to not give therapy," Dr. Ganz said.

And while determining the cause is considered very important, discovering what is not causing the fatigue might be equally important. Survivorship experts suggest that even if a treatable reason cannot be found, the hunt is still worthwhile because certain possibilities, particularly those that are life-threatening, can be eliminated.

"Making sure there's not a problem going on that could be causing it or exacerbating it is important, but ruling out the treatable problems can be an emotional lift, because you know that there's nothing being missed, not the least of which is recurrent cancer," Dr. Harpham said.

Patients also can be counseled to make adjustments to their lives so that they can live fully, even if it is not at quite the same pace as before. For example, Dr. Harpham worked with her physicians to look for a treatable cause for her fatigue. None was found. But she exercises regularly and takes afternoon naps in order to maintain her energy.

Also noteworthy, say some involved in cancer survivorship, is that the study also highlights the role of the primary care physician, which many expect will become more important as the number of cancer survivors increases and they live longer. At last count, there were about 10 million people with a history of this disease in the community. This number is projected to grow with the aging of the population and improvements in cancer care.

"Cancer patients are living longer, and the long-term effects are becoming more prevalent and more important," Dr. Harvey said.

Thus, care after cancer is being more and more recognized as an important part of the continuum, but the shift from oncology to primary care, which most patients make at some point, might not be smooth. The IOM released a report on this issue last November. "From Cancer Patient to Cancer Survivor: Lost in Transition" concluded that all cancer patients will end up receiving at least some of their care from a primary care physician but that the communication link to and from the oncologist was not that strong.

"Primary care physicians need an oncology medical summary, including the type of cancer and the cancer therapy. This information is critically important in the follow-up of survivors and helps us to anticipate particular late effects a survivor might be at risk for," said Kevin C. Oeffinger, MD, a family physician and medical director of Living Beyond Cancer: A Program for Adult Survivors of Pediatric Cancer at Memorial Sloan-Kettering Cancer Center in New York.