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SUBSEQUENT NEOPLASMS: CNS TUMOURS

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.

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This brochure is a sequel to the brochure Subsequent neoplasms: general. Please read that brochure first before you continue.

This PLAIN summary is based on the PanCareFollowUp guideline about “Subsequent CNS neoplasms” [1], which is itself based on the corresponding IGHG* guideline [2].

PLAIN version 2.1: 27/05/2024

Subsequent neoplasms: brain or spinal cord tumours

The brain and spinal cord together form the central nervous system (CNS). The CNS controls almost all the processes that happen within our body. For example, it allows us to feel, see, hear, smell and taste, but also to move and think.

Sometimes, some of the cells in the CNS can become abnormal and cause a tumour to grow. When this happens in the brain or spinal cord, this is called a CNS tumour, which can be benign (non-malignant) or malignant (cancer). Even a benign tumour can cause problems due to its size or position.

There are several common types of subsequent CNS tumours:

  • Meningioma, where a tumour is growing from the lining of the brain or spinal cord (meninges). Meningiomas are usually benign.
  • Glioma, where glial cells that provide support to the brain and spinal cord become malignant.

Only a very few people who have had cancer before develop CNS tumours.

Due to treatment of the first cancer, survivors sometimes have a higher risk of CNS tumours.

Brain and spinal cord 1 2

The brain and spinal cord
Created with BioRender.com
Hover over the numbers in the figure for more information.

Am I at higher risk of a CNS tumour?

Anyone, including people who have never had cancer treatment, may develop a CNS tumour. However, there are some cancer treatments that may increase the risk of having a CNS tumour as a subsequent tumour later in life.

The following treatment can increase the risk of a CNS tumour:

  • Radiotherapy to the head, brain or spinal cord or an area that includes the head, brain or spinal cord

You can find out if you have received radiotherapy to the head, brain or spinal cord 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 a CNS tumour, it does not always mean that this is caused by treatment for your first cancer. CNS tumours can also have other causes.

What are the symptoms and signs of a CNS tumours?

There are symptoms and signs that can tell you if you might have a CNS tumour. 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 of a CNS tumour depend on the size and position of the tumour. Common symptoms and signs of a CNS tumour are:

  • Cerebral (brain) tumours:
  • Headaches that keep coming back or get worse
  • Vomiting without nausea, especially in the morning
  • Seizures (fits)
  • Weakness or paralysis on one side of the body
  • Difficulty with speaking and/or seeing
  • Difficulty walking and/or balance

Spinal cord tumours:

  • Back pain that radiates to other parts of the body
  • Weakness in the arms and legs
  • Back pain that gets worse at night
  • Not being able to pass urine or stool (retention and constipation) for a longer period of time
  • Urine or stool leaking (incontinence)

These symptoms and signs are often caused by something else. However, early diagnosis and treatment of a CNS tumour is very important. If you experience any of these symptoms or signs, please contact your general practitioner or follow-up care specialist soon.

I am at higher risk of a CNS tumour. What tests should I have and when?

If you are at higher risk of a CNS tumour, it is advised to see a follow-up care specialist at least every 5 years.

Whenever you visit your follow-up care specialist, they may:

  • Ask about your neurological history, and whether you experience any symptoms and signs of a CNS tumour.
  • Do a neurological exam. A neurological exam includes small tests such as checking your reflexes and following a pen with your eyes.

You and your follow-up care specialist will discuss and jointly decide if you have an MRI scan of your brain and spinal cord on a regular basis (this is called shared-decision making). Having an MRI has its advantages and disadvantages, for example:

Having an MRI scan to check for a CNS tumour

Advantages Disadvantages
  • Having an MRI scan may help to identify the disease in an early stage. This could help treat the tumour more easily, with less heavy treatments. 
  • If you do not develop a CNS tumour , having an MRI scan could make you feel reassured that you do not have a .CNS tumour
  • An MRI scan is a safe and reliable method for diagnosing CNS tumours.
  • An MRI scan can cause anxiety when you are waiting for test results. 
  • Sometimes an MRI is difficult to interpret. This means that sometimes additional testing is needed, which can lead to more anxiety and stress. 
  • Sometimes a benign tumour such as a meningioma will never cause any health problems. Unfortunately, it is difficult to know if a meningioma will cause problems later on.
  • An MRI scan can also show other abnormalities of the brain or blood vessels. It is not always clear if these abnormalities will cause problems later on, or if they are harmless. Knowing you have abnormalities in your brain or blood vessels can cause stress and anxiety. It can also lead to difficulties getting insurance or a mortgage. 
  • For some people, especially when claustrophobic, having an MRI scan can be stressful. Imaging professionals should be able to help with positioning to minimise discomfort.
  • An MRI scan can be costly and may not be covered by your health insurance.

What happens if I (might) have a CNS tumour?

If you (might) have a CNS tumour, your general practitioner or follow-up care specialist will refer you to an oncology team. This team may include, but is not limited to:

  • Neurosurgeon (surgeon specialised in the brain and spinal cord)
  • Neurologist (physician specialist in the brain and spinal cord)
  • Neuro oncologist (physician specialised in cancer in the brain and spinal cord)
  • Radiation oncologist (physician specialised in treating cancer with radiotherapy)

The specialist may discuss different treatment options with you.

What else can I do?

Knowing that you may be at increased risk of subsequent cancer 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 we are not sure of its effect on your risk of a CNS tumour, 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 CNS cancer and that you know the symptoms and signs. If you have any further questions or 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 CNS tumours online. However, it is important to be aware that this information is not always up to date or accurate.

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 “Subsequent CNS neoplasms” [1], which is itself based on the corresponding IGHG* guideline [2].

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.

*International Guideline Harmonization Group for Late Effects of Childhood Cancer

[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.

[2] Bowers, D.C. et al. (2021) Surveillance for subsequent neoplasms of the CNS for childhood, adolescent, and young adult cancer survivors: a systematic review and recommendations from the International Late Effects of Childhood Cancer Guideline Harmonization Group. Available at: https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(20)30688-4/fulltext