CHRONIC PAIN
This page is part of the PanCare PLAIN summaries about late effects and recommendations for long-term follow-up care for survivors of childhood, adolescent, and young adult cancer. Click here, for more information on the PLAIN summaries.
PLAIN version 3: 03/03/2025
This PLAIN summary is based on the PanCare Follow-Up guideline about “Chronic pain” [1] , which is based on the consensus of different national guidelines.
Chronic pain
During cancer treatment, you may have experienced Pain. This is because tumours and cancer treatments can damage or press on nerves, bones or organs of the body. After cancer treatment, the injury usually heals and the pain goes away. Pain that is only temporary is called acute pain.
For some survivors, the pain caused by cancer or cancer treatment does not go away. pain that does not go away and is persistent is called chronic pain.
Chronic pain can be caused by an injury to the bones, joints or nerves that does not heal. Sometimes the injury does heal, but the pain still does not go away. Additionally, if you had an amputation alongside your treatment you may suffer from phantom pain. In this case, please talk to your doctor.
Phantom pain
Although phantom limb pain and residual limb pain or non-painful residual limb sensations in the remaining body part can occur at the same time, they are two different types of pain that also have different causes.
Survivors
Pain
From a physical point of view, pain is a life-sustaining biological reaction to damaging influences – even if tissue damage has not yet occurred. Due to its function as a damage indicator or warning, pain is usually associated with negative feelings so that we pay sufficient attention to it and learn as quickly as possible when it is dangerous for us. How intensely we feel a pain stimulus, whether it causes us to feel fear and panic, depends not only on the pure nerve signal, but is an interplay of biological, psychological and social factors.
All pain whose duration exceeds the extent of an acute (recent) cause and lasts for an incomprehensibly long time is called chronic pain. Strong and prolonged pain stimuli can make the transmitting nerve cells of the spinal cord and brain more sensitive to subsequent pain stimuli. This means that even mild stimuli can be perceived as severe pain. Under certain circumstances, these nerve cells, which have become hypersensitive
Am I at higher risk of chronic pain?
Anyone, including people who have never had cancer treatment, may develop chronic pain. It is advised to discuss your medical history and whether you experience(d) any symptoms and signs of chronic pain with your general practitioner or follow-up care specialist at least every 5 years.
If you experience any type of chronic pain in between your appointments, please contact your general practitioner or follow-up care specialist.
What are the symptoms and signs of chronic pain?
There are signs that can tell you if you might have chronic pain. You might not have these signs at the moment, but it is important to be aware of them in case they may develop in the future.
The following types of persistent pain may suggest that you have chronic pain:
- Pain that limits you in your daily activities
- Pain that prevents you from exercising regularly
- Pain that limits your ability to rest and sleep
- Pain that worries you or makes you feel sad, upset, anxious or helpless
- Pain that does not go away
- Pain that gets worse over time
- Pain that is new or different
If you experience any of these types of pain, please contact your general practitioner or follow-up care specialist.
Symptoms and signs
I am at higher risk of chronic pain. What tests should I have and when?
If you are at higher risk of chronic pain, it is advised to see your general practitioner or follow-up care specialist at least every 5 years. They may ask whether you have been experiencing (chronic) pain.
What happens if I have chronic pain?
This depends on the cause of your pain and how much pain you experience. Fortunately, there are many ways to deal with chronic pain. Chronic pain can be treated with medication (pain killers), exercise and/or psychological support (to help you deal better with the pain).
Please discuss these options with your general practitioner or follow-up care specialist. Depending on the best strategy for you, you may be referred to a:
- Pain specialist (physician specialised in pain)
- Physiotherapist (healthcare professional specialised in exercise)
- Psychologist (healthcare professional specialised in mental health)
The specialist may discuss different options with you.
What else can I do?
When you experience chronic pain, it is important to take care of your mental health. It is understandable if the pain makes you feel sad, upset, anxious or helpless. Yet these feelings can make your body feel restless and tense, which can make the pain worse. It may help if you can try to spend more time doing things you enjoy and that provide relaxation, such as reading, walking or listening to music. Looking for distractions can also help. If possible, try to stay active, exercise regularly and go to work/school.
Experiencing chronic pain can be difficult. Talking to friends and family can be helpful as well as specialist counselling and/or contact with support groups, such as patient organisations. For more information on taking care of your mental health, please read: Mental health problems.
Although it may not influence chronic pain, it is still important to live a healthy lifestyle. In particular, it is important to limit the intake of fatty foods. Taking care of your mental health may be beneficial; even small changes to your lifestyle can have a positive impact on both your physical and mental health. For more information on taking up a healthier lifestyle, please read: Health promotion.
If you have any further questions or the information in this brochure concerns you, please contact your general practitioner or follow-up care specialist.
Healthy lifestyle
- Having a healthy diet
- Drinking less (or no) alcohol
- Exercising regularly
- Quitting smoking (if you smoke)
Your follow-up care specialist or general practitioner may give you additional advice tailored to your individual situation for maintaining a healthy lifestyle. For more information on taking up a healthier lifestyle, please read: Health promotion.
Where can I find more information?
You may find more information about chronic pain online. However, it is important to be aware that this information is not always up to date or accurate.
Some sources of further information are:
- Pain UK: Here you can find more information about support for those dealing with chronic pain
On this website, you can also find more information related to this topic:
Please note
This PLAIN summary is based on the PanCare Follow-Up guideline about “Chronic pain” [1], which is based on the consensus of different national guidelines.
While the PanCare PLAIN information group strives to provide accurate and complete information that is up-to-date as of the date of publication, you can check with your general practitioner or follow-up care specialist if this summary reflects the most up-to-date information available and whether it is relevant for you.
Please do not rely solely on this information. It is best to also seek the advice of a qualified medical practitioner if you have questions regarding a specific medical condition, disease, diagnosis or symptom.
No warranty or representation, expressed or implied, is made concerning the accuracy, reliability, completeness, relevance, or timeliness of this information. PanCare has produced the English version and PanCare is not responsible for the translated versions of this summary.
The PanCare materials are free to use for anyone aiming to inform about late effects and long-term survivorship care. However, no financial advantage may be achieved. All communication should reference PanCare and link to the PanCare website.
[1] van Kalsbeek, R. et al. (2021) European PANCAREFOLLOWUP recommendations for surveillance of late effects of childhood, adolescent, and Young Adult Cancer, European journal of cancer. Available at: https://www.ejcancer.com/article/S0959-8049(21)00368-3/fulltext.