Fatigue and cancer

Cancer-related fatigue

Fatigue is when you feel very tired, weak, drained and worn out. Cancer-related fatigue is different to normal tiredness because it is more severe, not the result of recent physical or mental activity, and generally doesn’t get better with rest or sleep. It can be ongoing and affect what you can do.

Research shows that most people experience some level of fatigue, before, during and after treatment for cancer, and some people may feel fatigue for months or years after treatment ends.

People who are most at risk of developing cancer-related fatigue have fatigue before the cancer diagnosis; have depression or anxiety; sleep issues; other health conditions; and don’t do much exercise. Cancer-related fatigue may be mild, moderate or severe. It can vary depending on cancer type, stage, how long you have treatment, and your age. It may be worse if you have more than one treatment or if cancer has advanced.

Cancer-related fatigue usually has more than one cause, including:

• the cancer itself and cancer treatments such as chemotherapy, radiation therapy, immunotherapy and targeted therapy
• medicines, such as pain relief
• side effects of cancer or treatment, such as low red blood cells (anaemia), nausea, bowel issues or pain
• changes to blood and hormone levels
• not eating well or enough
• stress and mood changes, including depression and anxiety
• not sleeping well
• a lack of physical activity
• other health problems, such as infection, diabetes, arthritis and heart conditions.

Symptoms

Fatigue affects people with cancer in different ways. Symptoms of fatigue may be different before, during and after treatment, and can change over the day or week. Fatigue rarely occurs as just a single issue, it usually occurs with other issues such as pain, emotional distress, low red blood cell count (anaemia) and sleep issues.

People with cancer-related fatigue may report some or all of the following:

• having little or no energy
• feeling mentally or emotionally exhausted
• muscle aches and pains
• feeling weak all over
• trouble thinking clearly or concentrating
• difficulty doing daily tasks such as getting dressed, showering, cooking
• sleeping issues such as being unable to sleep or sleeping too much
• not enjoying their usual activities
• feelings of sadness or irritability.

Living with cancer-related fatigue can affect your daily life, including your work, relationships, sex life and social life.

How is fatigue diagnosed?

To work out if you have fatigue, your health care team will ask you some questions. Several screening questionnaires have been developed to measure how cancer-related fatigue is affecting you, and your doctor or nurse may use one of these. These questionnaires ask about when the fatigue started, how long it has lasted, has it changed over time, and how fatigue is affecting your daily life.

You may have several tests to find what might be contributing to the fatigue. These may include blood tests to check your red blood cell count, hormone levels, and kidney and liver function; urine tests; and heart function tests. If the results show that conditions like anaemia or low levels of some hormones are contributing to the fatigue, these can be treated. You may need a referral to a specialist or a fatigue clinic (if available).

The impact of fatigue

Cancer-related fatigue can last throughout treatment and for some time after it is finished. Energy levels usually improve over time. Most people find they feel better 6-12 months after treatment ends. For some people, cancer-related fatigue can continue for years.

Some people say fatigue is the most difficult side effect of cancer and its treatment. Sometimes, people might look well but still have severe fatigue. Fatigue can make it hard to do everyday things, which can make you feel frustrated, upset and isolated. If you have continued feelings of sadness, talk to your doctor. You may have low mood or depression, and treatment may help.

Your family and friends may not fully understand how cancer-related fatigue affects what you are able to do. They may expect you to do the same things you did before the cancer diagnosis, and not realise that some side effects continue for a long time. It’s natural for them to want the distress and disruption of cancer to go away. If you find their reactions difficult to handle, explaining how fatigue is affecting you might help them to understand. You can also give them this fact sheet – knowing more about cancer-related fatigue may help them understand what you’re experiencing.

If you took time off work for treatment, talk to your employer about returning to work. Australian laws require an employer to take reasonable steps to accommodate the effects of an employee’s illness. This may mean, for example, that your employer allows you to return to work in stages, is flexible with start and finish times, and gives you time to rest during the day.

Managing fatigue

The first step in managing fatigue is working out how it affects you. You can use a scale to describe your fatigue. You can rate the fatigue from 1–10; the higher the number, the worse the fatigue. Keep a record of your fatigue level at different times of the day, what you have tried and how it has worked. This information can help those caring for you understand how you are feeling day to day.

Talk to your general practitioner (GP); oncologist, haematologist or nurse; or an allied health professional such as an occupational therapist, physiotherapist or exercise physiologist. Let them know how you are feeling, including how long you have felt fatigued. Your doctor will manage any health conditions, medicines or symptoms that may be causing the fatigue. For example, if your red blood cell count is low (anaemia), you may be prescribed medicines or have a blood transfusion. If pain is making fatigue worse, your pain medicine may need to be changed.

The costs for seeing an exercise physiologist, physiotherapist, dietitian or occupational therapist vary. If your doctor refers you as part of a General Practitioner Management Plan, you may be eligible for a Medicare rebate for up to 5 visits per calendar year. If you have private health insurance, your insurer may cover some of the costs.

See below for tips on dealing with fatigue during and after treatment. How you manage fatigue will vary depending on the level of fatigue you have.

• Mild fatigue (0–3) – keep doing usual activities
• Moderate fatigue (4–6) – reduce symptoms and increase your energy levels gently
• Severe fatigue (7–10) – reduce symptoms and try to save your energy.

Question checklist

Asking your doctor questions will help you make an informed choice about your treatment and care. You may want to include some of the questions below in your own list:

• What is causing the fatigue?
• Do I need a blood test to find out what is contributing to the fatigue?
• What can I do to reduce or manage the fatigue?
• Is there anything that I should avoid doing?
• What can help me to sleep better?
• How long is the fatigue likely to last?
• Can a social worker talk to me about help at home?
• What exercise or activity do you recommend?
• Can you refer me to an occupational therapist, physiotherapist or exercise physiologist who works with people with cancer-related fatigue?
• Are there fatigue clinics or local group programs that I can attend?
• Are there any complementary therapies that might help me?