By Wendy Harpham, MD

Since my cancer diagnosis in 1990, both non-Hodgkin’s lymphoma and the therapies used to treat multiple recurrences have affected my energy to one degree or another. Even today, while I’m enjoying my longest remission, limited stamina affects me daily and keeps me from practicing clinical medicine.
Patients can play a major role in the prevention, detection, and treatment of fatigue if they understand and know how to talk about cancer-related fatigue.

The three key messages:

1. Cancer-related fatigue is real and different than the fatigue that healthy people feel
   
2. Cancer-related fatigue is treatable
   
3. The frustration of fatigue can be resolved

What is Cancer-Related Fatigue?
Cancer-related fatigue (CRF) is a complex of symptoms. Not surprisingly, the chief complaint is fatigue. Unlike the tiredness that healthy people feel at the end of a long day, CRF is more profound and difficult to ignore. It impairs your ability to function and is less predictable than normal fatigue, and one night’s rest does not relive it.

For me, it feels as if extra effort is required for normal activities and interactions. When my energy reserves are depleted, some functions become impossible.
Cancer-related fatigue has symptoms other than just tiredness, such as difficulty concentrating, poor memory, irritability, changed mood, weakness, decreased sexual desire, clumsiness, or loss of interest. When these symptoms dominate, you and your doctors might not connect them with their real cause: cancer fatigue.

Fatigue has led me to make mistakes such as pouring orange juice into my morning cereal or mixing up meeting times. Miscommunications also arise from fatigue-related body language. When I’m feeling happy but tired, I often appear to others as if I am angry, upset, or disinterested.

Context is important when dealing with fatigue. On the weekends, when my house is buzzing with my 3 children’s activities, I have more of a problem with a certain level of fatigue than during the school week when I can pace myself and take a nap in the afternoon.

What fatigue means to you is important, too. If you fear that your fatigue means your cancer has recurred or is progressing, you may perceive your tiredness as more debilitating than if you attribute your fatigue to effective cancer treatment or to a normal recovery.

Without an objective way to measure it, fatigue is an invisible wound, shaping survivors’ daily lives and future plans, posing a great challenge to finding a healthy "new normal" after cancer.

Causes of Cancer-Related Fatigue
Physical changes and stresses such as anemia or infection can cause fatigue during and after treatment.

Emotional, psychological, and spiritual stresses can affect the chemistry of the brain directly or indirectly such as interfering with your ability to eat or sleep. Besides the cancer issues, just dealing with fatigue is stressful.
Practical stresses: Normal life doesn’t stop after a cancer diagnosis. With bills to pay, meals to put on the table, and so on, you have to squeeze the demands of illness into your schedules. After treatment, you may be pushing yourself, trying to "make-up" for lost time or income.

Evaluation & Treatment
The first step is to tell your physicians and nurses about your fatigue.

• Describe your energy level before your diagnosis and compare it with how you feel now.
  
• Describe the easiest things that now are hard to do because of lack of energy.
  
• Describe activities you wish you could do but can’t because of low energy.
  
• Describe how your memory or your ability to concentrate has changed, if at all.
  
• How often do you make mistakes, silly or otherwise?
  
• How often do you have miscommunications with others?

Ask your physician to review all your medications, including nonprescription and alternative therapies you might be using. Talk with your physicians about your level of conditioning, nutritional status, and quality and quantity of sleep at each stage of survivorship.

In addition to looking at physical factors, talk with your physicians and nurses about the various stresses in your life. One short visit about the emotional, social, or financial stresses of your illness may reveal problems that, when addressed by support services, can help your fatigue. Your willingness to talk about these stresses may save you hours and hours of doctor visits and medical tests for otherwise unexplained and unremitting symptoms of fatigue.

While evaluation is under way, ask your physicians and nurses about what to do in the meantime. You often can improve your overall energy level even when some problems that cause fatigue are unavoidable. For example, although you can’t stop the cancer treatments, your overall sense of energy may improve after tending to other causes of fatigue such as disrupted sleep, suboptimal nutrition, or anxiety.

Once you and your healthcare team have completed the evaluation, follow-up is the key. Continue to work together, re-evaluating your tiredness periodically until treatable causes of fatigue are found or until your fatigue resolves. This on-going vigilance is warranted because fatigue can be the end-result of a variety of problems, some of which may first develop months or years after treatment.

Resolving the Frustration of Fatigue
Here are four suggestions that may help you resolve the frustration of fatigue:

1. Remind yourself that your fatigue is real and different than the fatigue that healthy people feel at the end of a long day.
   
2. Recognize your energy limitations and work within them.
   
3. Communicate honestly with family and close friends, sharing how you feel, physically and emotionally, and what you need.
   
4. Unlink the emotional turmoil from the physical experience of fatigue. Today, instead of feeling angry about what I can’t do, I focus on what I can do. Instead of feeling sad about losing time by taking a nap, I tell myself, "Sleeping is not wasting time!" I accept my energy limitations and also nourish hope that my energy will improve. Learning about cancer-related fatigue helps me live as fully as possible.
   

Wendy S. Harpham, MD, is the author of Diagnosis: Cancer, Your Guide Through the First Few Months (WWNorton, 1998), After Cancer, A Guide to Your New Life (HarperCollins, 1995). When a Parent Has Cancer, A Guide to Caring for Your Children (HarperCollins, 1997), and The Hope Tree (co-authored with Laura Numeroff; Simon and Schuster 2001).