Bram Kuiper, PhD, is a Dutch clinical psychologist and scientific entrepreneur. With over 30 years of experience in the field of psycho-oncology and in co-writing treatment protocols, he has devoted his career to help as many people as possible who suffer from cancer-related fatigue.
Cancer-related fatigue is more than just being tired. It does not go away with a cup of coffee or a few extra hours of sleep. Compared to regular tiredness or fatigue, cancer-related fatigue occurs suddenly and feels like exhaustion. People with cancer often describe fatigue as feeling wiped out, drained like an empty battery, or feeling as though they’ve hit a brick wall.
Cancer-related fatigue can be difficult to explain to others. It feels worse than normal fatigue and takes longer to recover from. As a patient said to me, “I can’t explain it. Words fail me. Someone who hasn’t experienced this fatigue cannot understand.” Below are some common questions people with cancer-related fatigue and their loved ones may have, including ways to manage and cope with this side effect.
1: How common is cancer-related fatigue?
Cancer-related fatigue is one of the most common side effects of cancer and cancer treatment. It can happen at varying points in the cancer experience. For those recently diagnosed and undergoing treatment, approximately 80% to 90% experience fatigue within 1 year of diagnosis, according to a study published in Cancer. Once treatment has been completed, it is estimated that 30% to 40% of patients and survivors experience fatigue even years later.
2: How do I know if I have cancer-related fatigue?
Cancer-related fatigue cannot be measured objectively. It’s different for everyone. There is no blood test or scan for it. However, like pain, fatigue can be described through a ranking scale from 0 to 10, where 0 is not tired at all and 10 is severely tired. Internationally, it has been agreed that a score below 4 indicates that a person is mildly fatigued, between 4 and 7 is moderately fatigued, and above 7 is severely fatigued.
3: What causes cancer-related fatigue?
Cancer treatments like surgeries, chemotherapy, radiation therapy, and immunotherapy can all contribute to cancer-related fatigue. In some cases, it can be attributed to physical causes like anemia or pain. It’s important to always talk to your doctor as they can find out if other medical causes or conditions, like diabetes or cardiovascular disease, may be contributing to the fatigue. Aside from physical issues, fatigue can often be due to a combination of several factors, including stress, sleep issues, having a sedentary lifestyle, and depression.
4: How does cancer-related fatigue impact people with cancer?
We know from research and clinical experience that cancer-related fatigue can have effects on many aspects of a patient’s quality of life, including their physical, mental, and social well-being. It can also limit their ability to function, socialize, and participate in activities they used to enjoy. Patients are not the only ones affected by cancer-related fatigue; it also has an impact on the lives of family members and loved ones.
5: What can I do to better manage my fatigue?
Recent guidelines support the use of behavioral and mindfulness-based cognitive therapy, exercise, and providing education around the condition.
Try looking at your energy level every day like a glass of water. You only have so much to use throughout the day. Daily tasks like cooking dinner will take away energy. But there are things that can give you energy, like chatting with a friend or reading a book. It’s important to address the things in life that can be leaking energy, such as stress, anxiety, or sleep issues. Being able to better understand what impacts energy levels will allow you to balance and manage your fatigue. Eating well, exercising, and practicing good sleep habits are another important part of the energy equation.
6: What resources are available to help?
Online resources to help with cancer-related fatigue are available through Cancer.Net, the American Cancer Society, and cancer-specific advocacy groups. Many hospitals and cancer centers have support centers that can be very useful during and after treatment. Support is also provided through individual cancer patient organizations like Gilda’s Club/Cancer Support Community and Triage Cancer, which have information and programs to address cancer-related fatigue.
7: How can relatives, friends, and family support someone with cancer-related fatigue?
Understanding what cancer-related fatigue is and having empathy is a good place to start. Many individuals feel that others don’t understand or realize the magnitude of what they are going through. Being a support system to help with daily chores and tasks or providing a listening ear can provide a tremendous amount of help.
8: How can I manage fatigue when at work or returning to work after treatment?
Reintegrating back into work is an important topic that isn't talked about enough. One of the main problems of fatigue in people with cancer is that it is invisible to others. Speaking up and saying something is a good first step. It’s important to have a dialogue with your supervisor so that adjustments and accommodations can be made, like working a shortened schedule or working from home a few days a week. Cancer is included as part of the Americans with Disabilities Act (ADA). It is hard for someone who has never experienced cancer-related fatigue to fully understand what you are going through. When you are fatigued at work, try to take regular small breaks, even if it’s just a couple of minutes to take a few deep breaths, do relaxation exercises, or take a walk, each of which can help give you energy.
If you or a loved one is living with cancer-related fatigue, always remember to say something. It’s important to talk with your health care team about it. They can assess if there are any physical issues that may be contributing to the fatigue. Doing something to address the cancer-related fatigue is the most important step you can take. Just dealing with it, hoping it goes away, or staying silent doesn’t help. Remember: you’re not alone in this, and there is support available.