NEUROCOGNITIVE PROBLEMS

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.

Neurocognitive problems

The human brain is very complex and has many functions. For example, the brain allows us to move, speak, think and feel, and controls processes that happen within the body.

Damage to the brain can cause a number of neurocognitive problems, including difficulties with memory, concentration, learning and understanding information. This can cause social and learning difficulties and lower school or work performance. It can affect many aspects of life.

Neurocognitive problems caused by cancer or its treatment is a type of acquired brain injury (ABI).

Am I at higher risk of neurocognitive problems?

Anyone, including people who have never had cancer treatment, may have or develop neurocognitive problems. However, there are some medical conditions and cancer treatments that may increase the risk of having neurocognitive problems. The problems that can occur depend on the type of medical condition or cancer treatment received.

The following medical conditions can increase the risk of neurocognitive problems:

  • CNS tumours

The following treatments can increase the risk of neurocognitive problems:

  • Brain surgery
  • Radiotherapy to the brain or an area that includes the brain
  • Any chemotherapy drug that is given directly into the fluid that surrounds the brain or spinal cord (intrathecal treatment)
  • High doses of intravenous cytarabine and methotrexate (chemotherapy drugs)

If you received your treatment at a younger age you may be at a higher risk for neurocognitive problems.

You can find out if you had any of these medical conditions or treatments 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 experience neurocognitive problems, it does not always mean that this is caused by cancer or its treatment. Neurocognitive problems may have other causes such as a head injury.

What are the symptoms and signs of neurocognitive problems?

There are symptoms and signs that may suggest you could be experiencing neurocognitive problems. 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.

Symptoms and signs that may suggest that you have neurocognitive problems:

  • Difficulties with school or work performance
  • Being distracted easily, difficulty paying attention
  • Difficulties with planning and completing tasks
  • Difficulties with language
  • Difficulties with memory, learning and understanding information
  • Difficulties processing information
  • Changes in behaviour affecting daily activities
  • Difficulties with visual-motor integration, for example eye-hand coordination

If you recognise any of these symptoms or signs in yourself, please contact a general practitioner or follow-up care specialist.

I am at higher risk of neurocognitive problems. What tests should I have and when?

If you are at higher risk of neurocognitive problems, it is advised to see your general practitioner or follow-up care specialist regularly. How often you should have tests depends on your age:

  • Children (0-18 years): Every 2 years
  • Adults (19 years or older): Every 5 years

Your general practitioner or follow-up care specialist may then ask you about your school and/or work performance and whether there has been a progress or decline in your performance lately.

What happens if I have neurocognitive problems?

If you have neurocognitive problems, your general practitioner or follow-up care specialist will probably refer you to a:

  • (Neuro)psychologist (psychologist specialised in the brain and mental health)

The (neuro)psychologist may do further testing to find out what your particular difficulties are and discuss different options with you.

What else can I do?

Knowing that you may be at increased risk of neurocognitive problems 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 lower your risk of neurocognitive problems, it is still 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 neurocognitive problems and that you know the symptoms and signs. If you have any further questions or if the information in this 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 neurocognitive problems 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:

  • National Cancer Institute (US): Here you can find more information about memory and concentration problems during and after cancer treatment
  • The Brain Tumour charity: Here you can find more information about Cognition and learning difficulties because of a brain tumour

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 “Neurocognitive problems” [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.