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Follow Up:

After treatment for a craniopharyngioma there are many chronic health problems to be aware of and to screen for in long-term survivors of this disease.

Here is a PDF (which can be printed) giving an example of the type of follow up necessary for a long-term survivor after treatment for craniopharyngioma: 


Example of annual follow up:

Investigation Important aspects:
  • Level of energy, general health
  • Vision
  • Neurological symptoms (for example headaches, seizures and TIA type episodes)
  • Change in short term memory
  • Depression
  • Social/employment situation
  • Smoking, alcohol ingestion and recreational drug use
  • Current medications
  • List of physicians/HCPs involved in follow up



Always Check:


Neurocognitive testing
  • If there are problems such as short term memory loss, it may be important to formally document cognitive impairment in order to obtain vocational or recreational rehab & to apply or a disability pension


Blood work


Radiology screening




Assessment by the following specialists every year:

  • Endocrinology
  • Ophthalmology or Neuro-ophthalmology


Supportive care
  • Family counselling
  • Psychology
  • Psychiatry
  • Vocational and recreational rehab




  • Advise about diet, exercise and lifestyle choices (such as smoking) which may further increase the risk of vascular disease
  • Avoid sunburn and wear a hat to protect skin and scalp from sun related damage


ACTH Deficiency:

  • During infection, surgery and illness craniopharyngioma survivors are very likely to need support with extra steroid medication
  • Medic Alert bracelets are advised to warn about ACTH deficiency


Second malignant neoplasms (SMNs):

The patient should be advised to seek immediate medical help if:

  • A new swelling (painless or painful) appears within the previous RT field as this may be due to a SMN
  • Severe, persistent headaches develop associated with possible nausea and vomiting (may be associated with a new intracranial mass lesion)

Patient Information at Children's Oncology Group long term follow up guidelines:




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