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Referral guidance for suspected childhood brain or CNS cancer

Last reviewed dd mmm yyyy. Last edited dd mmm yyyy

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The Urgent Cancer Referral guidelines have been updated. For children with a suspected brain cancer or CNS tumour NICE state (1).

  • consider a very urgent referral (for an appointment within 48 hours) for suspected brain or central nervous system cancer in children and young people with newly abnormal cerebellar or other central neurological function

There is no further detail concerning symptomatology that define "newly abnormal cerebellar or other central neurological function". For information only - the detailed guidance from the previous NICE guideline (2) is presented below but local implementations of NICE guidance will need to define the symptomatology for this term.

Referral for suspected brain cancer or CNS tumour:

  • Refer immediately children or young people with:
    • a reduced level of consciousness
    • headache and vomiting that cause early morning waking or occur on waking as these are classical signs of raised intracranial pressure
  • Refer immediately children aged younger than 2 years with any of the following symptoms:
    • new-onset seizures
    • bulging fontanelle
    • extensor attacks
    • persistent vomiting
  • Refer urgently or immediately children with any of the following neurological symptoms and signs:
    • new-onset seizures
    • cranial nerve abnormalities
    • visual disturbances
    • gait abnormalities
    • motor or sensory signs
    • unexplained deteriorating school performance or developmental milestones
    • unexplained behavioural and/or mood changes.

Refer urgently children aged 2 years and older, and young people, with:

  • a persistent headache where you cannot carry out an adequate neurological examination in primary care.

Refer urgently children aged younger than 2 years with: any of the following symptoms suggestive of CNS cancer:

  • abnormal increase in head size
  • arrest or regression of motor development
  • altered behaviour
  • abnormal eye movements
  • lack of visual following
  • poor feeding/failure to thrive.
  • squint, urgency dependent on other factors.

The guidance regarding neuroblastoma has also been updated (1):

  • Neuroblastoma
    • consider very urgent referral (for an appointment within 48 hours) for specialist assessment for neuroblastoma in children with a palpable abdominal mass or unexplained enlarged abdominal organ

Again, for information only, the previous NICE guidance regarding neuroblastoma is listed and it is likely that local implementation of NICE guidance will require more detail than the new guidance as stated.

In consideration of neuroblastoma (2):

Neuroblastoma (all ages)

  • most children and young people with neuroblastoma have symptoms of metastatic disease which may be general in nature (malaise, pallor, bone pain, irritability, fever or respiratory symptoms), and may resemble those of acute leukaemia
  • investigationsRefer urgently children with:
    • full blood count if any of the following symptoms and signs:
      • persistent or unexplained bone pain (X-ray also needed)
      • pallor
      • fatigue
      • unexplained irritability
      • unexplained fever
      • persistent or recurrent upper respiratory tract infections
      • generalised lymphadenopathy
      • unexplained bruising.
    • if neuroblastoma is suspected carry out an abdominal examination (and/or urgent ultrasound), and consider chest X-ray and full blood count. If any mass is found, refer urgently
    • infants aged younger than 1 year may have localised abdominal or thoracic masses, and in infants younger than 6 months of age there may also be rapidly progressive intra-abdominal disease. Some babies may present with skin nodules. If any such mass is identified, refer immediately
    • proptosis
    • leg weakness
    • unexplained back pain
    • unexplained urinary retention.


  1. NICE (June 2015). Suspected cancer: recognition and referral
  2. NICE (June 2005). Referral Guidelines for Suspected Cancer.

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