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HIGHER RISK GROUPS

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.

On this page you can find:

This PLAIN summary is based on the PanCareFollowUp guideline about “Higher risk groups” [1], which is based on the consensus of different national guidelines.

PLAIN version 2.1: 27/05/2024

Late effects of childhood cancer and cancer treatment

As you know, people diagnosed with cancer need cancer treatments to recover. Cancer treatments damage and kill cancer cells, but can also damage healthy cells. When healthy cells get damaged, this may increase the risk of developing health problems later in life. Future health problems caused by childhood cancer or cancer treatment are called late effects. Some of these health problems you may have experienced during or right after cancer treatment.

Late effects can be physical, such as heart problems, diabetes or chronic fatigue (feeling tired all the time). But survivors of childhood cancer can also have problems with their mental health, social skills, daily activities, school or work. Approximately two-thirds of survivors develop one or more late effects. Many late effects are treatable or can be well-managed. This is why it is important to identify late effects as soon as possible.

For most of the late effects that can occur after childhood cancer and cancer treatment, there is a PanCare PLAIN language summary. These summaries contain important information for childhood cancer survivors, as well as their non-specialist healthcare providers, relatives and friends.

The PLAIN language summaries are based on the guidelines from the IGHG (International Guideline Harmonization Group for Late Effects of Childhood Cancer) and the PanCareFollowUp guidelines, which is based on the consensus (agreement) of different national guidelines. At the bottom of every summary, you can find a link to the guideline the summary is based on.

Each summary contains a section describing:

  1. The late effect
  2. Who is at higher risk of that particular late effect
  3. Which symptoms and signs you may need to look out for
  4. Which tests you should have and when
  5. What happens if you develop that particular late effect
  6. What else you can do

Your follow up care specialist will be able to advise on which brochures you might need.

Am I at higher risk of one or more late effects?

Your risk of having one or more late effects depends on your diagnosis (which type of cancer you had) and the treatment(s) you received (which type, which dose and for how long).

You may have a higher risk of multiple late effects when you:

  • had a brain or spinal cord tumour
  • received a stem cell transplantation from a donor (allogeneic)
  • had severe health problems (for example with your heart, kidneys or lung function) during treatment

You can find out which cancer diagnosis and treatment(s) you received by looking at your treatment summary. If you do not have a treatment summary or if you have any questions, do contact your treating hospital.

If you develop physical or mental health problems, it does not always mean that this is caused by your cancer treatment. Problems with physical, mental or social health may have other causes.

What are symptoms and signs of late effects?

There are symptoms and signs that can tell you if you might have late effects. You might not have these symptoms and signs at the moment, but it is important to be aware of them in case they may develop in the future.

For each type of late effect, the signs and symptoms are different. If you experience any signs or symptoms of physical or mental health problems, please contact a general practitioner or follow-up care specialist.

I am at higher risk of one or more late effects. What tests should I have and when?

What tests you should have and when, depends on the late effects you are at higher risk of. You can find out what tests you should have and when by looking at your treatment summary or your care plan. On this website, you can also find information about which tests you are advised to have for different late effects.

It is advised to see a follow-up care specialist at least every 5 years (and possibly more often). If you do not have access to a follow-up care specialist, it is advised to discuss your cancer history with your general practitioner. If cancer at an unusually young age is common in your family, it is advised to see a clinical geneticist (doctor specialised in genes and hereditary diseases).

What happens if I have one or more late effects?

If you have one or more late effects, your general practitioner or follow-up care specialist will probably refer you to a relevant specialist. The specialist will then discuss different options with you.

What happens when you have one or more late effects depends on the type(s) of late effect(s) and the impact on your daily life. Some late effects can be prevented or even treated by adopting a healthier lifestyle. Other late effects may need specific medical treatment.

You and your follow-up care specialist will discuss and jointly decide what the preferred follow-up care for you is (this is called shared-decision making).

What else can I do?

Knowing that you may be at increased risk of late effects 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.

It is also very important to live a healthy lifestyle. 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.

It is important that you are aware of the possibility of developing late effects and that you know the symptoms and signs. If you have any further questions or if the information in this brochure or any other brochure concerns you, please contact your general practitioner or follow-up care specialist.

Where can I find more information?

You may find more information about late effects 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:

On this website, you can also find more information related to this topic:

Please note

This PLAIN summary is based on the PanCareFollowUp guideline about “Higher risk groups” [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