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Supratentorial PNET



Follow up

After treatment for supratentorial PNET there are many chronic health problems to be aware of and to screen for in long-term survivors of this disease.  These health problems are very similar to survivors who were previously treated for medulloblastoma as therapy generally involves craniospinal RT (with a boost to the primary site) and chemotherapy.

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



Example of annual follow up:

Investigation Important aspects to assess:


  • Current health, energy level, appetite, any new symptoms
  • Social/employment situation
  • Life style: smoking, alcohol and recreational drug history, exercise
  • Current medications
  • List of physicians/HCPs following patient


After cranial RT, check for:


After spinal RT, also check for:


After chemotherapy, check for:



Always Check:

  • Blood pressure.  After cranial RT there is a risk of metabolic syndrome
  • Weight and height (Body Mass Index: BMI)
  • Examine neck to exclude thyroid nodules
  • Check for alopecia or hair thinning within previous RT field
  • Skin within previous RT field (increased risk of basal cell carcinomas and rarely melanomas)
  • Neurological examination for focal neurological deficits (signs will depend on site of primary)
  • Visual acuity, visual fields and fundoscopy
  • General examination of respiratory, cardiovascular and GI systems


After spinal RT also check:

  • Spine for scoliosis, kyphosis and short sitting height


Neurocognitive testing


Hearing Assessment
  • Audiology referral and testing should be organized every 1 - 2 years


Blood work


Radiology screening
  • MR of the head every 3 years or so in long term follow up to exclude radiation induced meningiomas
  • Ultrasound scan of the thyroid every 3 years after cranial and craniospinal RT




Patient should be assessed by specialists in the following fields every 1 - 2 years:

  • Endocrinology
  • Ophthalmology/Neuro-ophthalmology


Supportive care
  • Family counselling
  • Psychology
  • Psychiatry


Other screening

After spinal RT there is an increased risk of secondary malignancy:

  • Patient should have early screening for colon cancer
  • COG recommends that colonoscopy should be performed beginning at age 35 years or 10 years following RT (whichever occurs last)


Early screening for osteoporosis (bone density)



ACTH deficiency:

  • Survivors of supratentorial PNET with hypopituitarism and ACTH deficiency need support with extra steroid medication during infections, surgery and illness
  • 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



  • Advise about diet, exercise and lifestyle choices (such as smoking) which may further increase the risk of vascular disease
  • Avoid sunburn. Increased risk for skin cancer within previous RT field. Use sun screen and wear a hat to protect skin
  • Diet should contain adequate number of dairy servings, Vitamin D and calcium to help prevent osteoporosis
  • Previous spinal RT may be associated with spinal underdevelopment, scoliosis and increased risk of degenerative arthritis and osteoporosis - therefore survivors who had this therapy should avoid work which involves lifting heavy weights


Patient Information

COG Survivorship Guidelines





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