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Follow up

After treatment for medulloblastoma 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 of childhood medulloblastoma: 


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, recreational drug history and exercise
  • Current medications
  • List of physicians/HCPs following patient


After cranial RT, check for:

  1. Neurological symptoms (e.g. headaches, seizures, strokes and TIA type episodes)
  2. Change in short term memory
  3. Depression


After spinal RT, also check for:


After chemotherapy, also check for:



Always Check:

  • Blood pressure
  • Weight and height (Body Mass Index: BMI)
  • Examine neck to exclude thyroid nodules
  • Check for sparse hair growth or alopecia within the previous RT field
  • Skin within previous RT field (increased risk for basal cell carcinomas and rarely melanoma)
  • Check for hypoplasia of the upper cervical spine and occipital region
  • Neurological examination and signs of cerebellar dysfunction (ataxia, nystagmus and incoordination)
  • Visual acuity, visual fields and fundoscopy
  • General examination of respiratory, cardiovascular and GI systems


After spinal RT also check:

  • Spine for scoliosis, kyphosis & short sitting height


Neurocognitive testing
  • May be important to demonstrate problems with higher mental function in order to obtain vocational or recreational rehab & to be eligible for a disability pension


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 every 1 - 2 years:

  • Endocrinologist
  • Ophthalmologist/Neuro-ophthalmologist


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 medulloblastoma 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, especially of skin within the previous RT field. Use sun screen and wear a hat for skin protection
  • 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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