New Guidelines Released for Coping With Cancer-Related Fatigue
Updated for the first time since 2014, these new recommendations consider advanced cancer treatments and immunotherapy
In the late 1980s and early '90s, both of Karen Mustian's grandmothers had cancer. Caring for them, watching them suffer, feeling helpless to lessen their suffering, she suffered as well.
"Back then, doctors didn't know as much as they do now about ways to help people with cancer feel better. Antiemetic guidelines to fight nausea and vomiting were one of the tools in their toolbox, but they didn't understand how debilitating cancer fatigue could be, and didn't have many suggestions about ways to ameliorate it," Mustian says.
An exercise physiologist and psychologist, Mustian is the associate director for Population Science at Wilmot Cancer Institute and dean's professor in the Department of Surgery, Cancer Control, at the University of Rochester Medical Center in New York. She is an international expert in symptom management, specializing in exercise and integrative medicine to manage the side effects of cancer and its treatment. She is also the lead author of newly revised guidelines on managing fatigue in adult cancer survivors.
The American Society of Clinical Oncology and Society for Integrative Oncology guidelines were updated last year for the first time since 2014. These guidelines, based on an expert panel's systematic review of 113 randomized clinical trials conducted between 2015 and 2023, highlight approaches that are effective both during and after cancer treatment.
They are somewhat different from past sets of recommendations because they include patients who are in the initial diagnostic phase or in active treatment as well as those who have completed therapy. The panel of experts also considered the ways in which cancer approaches have changed since 2014, with many patients now undergoing extended treatments with newer targeted approaches and immunotherapy.
"The trajectory of cancer patients today can be one or more treatments extending over a year or longer," Mustian says.
Cancer Fatigue
Cancer fatigue is not like any kind of tiredness you've experienced. It's not like the college student who stays up all night, does an 8 a.m. gym workout, spends six hours in lecture halls, goes for pizza with friends and then studies until 1 a.m. It's not like the exhaustion experienced by new mothers (although if you ever had a colicky infant, you'll never forget that powerful urge to grab a midday nap nor the relief of falling into bed after a two-hour stint of walking the floors with a screaming baby.)
Perhaps you've tolerated the chemo or radiation quite well, with very little nausea and not much hair loss thanks to a "cooling cap," but you're so tired, and, along with the other things that go along with the illness, the overwhelming fatigue feels like the final insult. You get tickets to a Broadway show but fall asleep when the cast is singing your favorite song. You're watching a movie on Netflix and wake up to realize that you missed the part where you learn who the bad guy is.
Cancer fatigue is defined by the National Cancer Institute as a distressing, persistent sense of physical, emotional and/or cognitive exhaustion related to cancer that is not proportional to activity, does not necessarily improve with rest or sleep and interferes with functioning. An estimated 80% of patients experience fatigue during active treatment, with 20%-30% of patients having it last for months or years after treatment has ended.
Symptoms may include generalized weakness or limb heaviness, diminished concentration, experiencing sleep as unrefreshing, difficulty completing daily tasks due to fatigue, decreased motivation to engage in usual activities and fatigue lasting several hours or longer.
The timing of the most intense fatigue can vary depending on individual factors and on the type of treatment. For example, people treated with cyclic chemotherapy usually exhibit peak fatigue in the days immediately after treatment, with it lessening until the next infusion. For patients undergoing radiotherapy, the fatigue tends to be cumulative as more sessions take place. The Schwartz Cancer Fatigue Scale or other instruments may be used to help assess the level of fatigue.
The causes of cancer-related fatigue are multifactorial and not yet fully understood, Mustian says. But "we do know that chronic inflammation from the cellular molecular level up to the whole body level leads to fatigue, with inflammation affecting every organ system."
The stress of tests, testing positive for cancer and undergoing and recovering from surgery can lead to psychological and physical fatigue before potential treatment side effects from chemotherapy, radiation, hormonal or biologic therapies have even begun.
What's New and Recommended
The panel's findings and recommendations for cancer-related fatigue include:
- Exercise, both aerobic and resistance training and resistance-only interventions, strongly recommended since it has been shown to significantly reduce the severity of CRF.
- Pyschoeducation and cognitive behavioral therapy, which address the psychological aspects and help patients develop coping strategies to manage fatigue’s impact on daily life.
- Mind-body therapies including mindfulness-based and movement-based programs such as tai chi or qigong.
- Ingesting American ginseng may be helpful, but other dietary supplements were not found effective.
- Along with exercise, CBT and mindfulness-based programs, post-treatment aids include yoga, acupressure and moxibustion, a traditional Chinese medicine technique.
The guidelines also state that clinicians should not routinely recommend L-carnitine, antidepressants, wakefulness agents or psychostimulants to manage symptoms of CRF due to insufficient evidence of effectiveness or potential for adverse effects.
And for those who are experiencing cancer-related fatigue, consider these self-help strategies:
- Incorporate physical activity and exercise as tolerated. The American College of Sports Medicine’s website has excellent resources.
- Gentle hatha yoga and restorative yoga have been shown to improve sleep quality, decrease fatigue and enhance quality of life.
- An activity log can help patients see their energy ebb-and-flow patterns to prioritize and plan activities accordingly.
- A bedtime routine and limiting daytime naps may help patients sleep better at night. Insomnia or poor sleep has been shown to worsen cancer fatigue.
- Socializing with family or friends may be enjoyable but patients should recognize and respect energy limitations.
- Getting emotional support from loved ones, an oncology social worker or therapist, a support group or a trusted religious leader may help. Spirituality may help with positivity.
- Complementary and mind-body therapies can help in managing anxiety and depression.
