Fatigue as a late effect of cancer treatment

Fatigue means feeling exhausted and having no energy. Fatigue can be severe and can make day-to-day life very difficult. Some people experience fatigue when they are having cancer treatment or after they have finished cancer treatment as a late effect. 

Late effects are delayed responses to treatment, and these can appear months or even years after treatment. These can be related to the cancer itself or can be the direct result of cancer treatment. Monitoring and scans to check for late effects can be needed for years after your treatment is finished. 

They are different to the long-term effects of cancer, which could start during or shortly after treatment and don’t go away within six months of treatment ending.  

No, fatigue is different from normal tiredness. Tiredness doesn’t usually last very long and you feel better after you sleep or rest. It’s also often caused by a specific activity (like exercise) or if you’ve had a late night. Fatigue is more persistent and ongoing. It can make things that you used to find easy very difficult, like having a shower or washing up.  

Feeling extremely exhausted all the time isn’t easy and can have a big impact on your life. 

You might: 

• Have difficulty doing things that you used to find easy 
• Feel like you have no energy or strength 
• Find it hard to concentrate or feel like you’re thinking slowly – sometimes known as brain fog 
• Find it hard to remember things 
• Have trouble sleeping (this is also called insomnia and might happen  because you’ve slept more in the day or because you find it hard to get to sleep at night) 
• Feel breathless after light activity 
• Lose interest in sex 
• Feel dizzy 
• Have low mood and feel anxious 

There are various things connected to having cancer that can cause fatigue. These can be: 

• As a symptom of your cancer diagnosis itself 
• Cancer treatments and their effects 
• Anaemia (not having enough red blood cells) 
• Pain  
• Anxiety or depression  

Even though you might not consider yourself disabled, under UK law, a diagnosis of cancer is considered a disability. This means you’re legally protected from discrimination at work and in education. This isn’t just while you’re having treatment, but for the rest of your life, including if you don’t have cancer anymore (if you’re in remission).  

This means that it’s illegal for your employer, school, college or university to discriminate against you once you’ve told them you have cancer or you had it in the past. There are different ways people can be discriminated against, for example you might get into trouble for taking sick leave (which might be for appointments or due to fatigue) or for being late to class because of fatigue.   

Fatigue can get in the way of your day-to-day life and make it really difficult to study or work. It might be that there are some changes that the organisation could make that would support you to still attend lessons or go to work. Reasonable adjustments are changes that should give you additional support to do your job or to study. The idea is to reduce any disadvantages you have at work or school in comparison to someone without a cancer diagnosis. 

At work, these changes could involve: 

• working shorter hours 
• working from home 
• making the building more accessible. 

If you’re a student, you can also talk to your teacher or tutor at your place of education about reasonable adjustments. This might involve:  

• attending class from home 
• getting extensions on deadlines 
• having someone to write for you during an exam (a scribe) 

You can find some more examples of reasonable adjustments here. 

You don’t have to tell anyone about your cancer diagnosis if you don’t want to, this includes your employer or tutor. If you decide not to tell them about your diagnosis, they are not legally required to make reasonable adjustments. 

If you decide to tell your employer or tutor about your diagnosis, then they are legally required to make reasonable adjustments. If you’ve told them about your diagnosis and they refuse to consider making reasonable adjustments, you could make a discrimination claim under the Equality Act.  

There aren’t any specific treatments for fatigue, but it’s still worth talking to your care team about your fatigue and what can be done. Fatigue can sometimes be overlooked, so it’s worth letting your doctor or nurse know if it’s affecting you. They might look into whether any of your medications are making your fatigue worse or have some advice for you on how to manage it.  

Fatigue can last for a long time and can be very frustrating. While you’re feeling like this, you need to take it easy, sleep when you feel like you need to and be active in a way that works for you. Movement can help with tiredness and fatigue and it might help with your mental health too. Find a type of exercise that you like and that works for you can help you stay consistent. 

Try to take each day as it comes and don’t be hard on yourself if you’re not achieving as much as you hoped. If you’re looking after children, try to do activities where you can sit down. Try to stick to a routine and go to bed at the same time each night. 

We know that hearing from other young people who have been through similar experiences can be helpful. Here are some tips from young people about coping with fatigue: 

• If your body is telling you to sleep just sleep 
• Use an eye mask for daytime naps to help block out the lights 
• Try not to go too far from home so you can get back easily if you feel tired 
• Do something little every day to build energy 
• Don’t plan too much 
• Find peace in saying no to things – don’t feel like you always need to be available, people understand 
• Gentle exercise, like a short walk, some stretching, or throwing and catching a ball, can be really helpful; sometimes, you can feel you have more energy afterwards 
• Plan your week around things that might take more energy, for example, if you have a birthday party in the evening, have a relaxed morning – living with fatigue is about give and take and being kind to yourself 
• Set clear boundaries with the people around you for what you may or may not be able to manage because of fatigue