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Pineal Tumors



Follow Up

After treatment for pineal tumors there are many chronic health problems to be aware of and to screen for in long-term survivors of these diseases:

Example of annual follow up:

Investigation Important aspects:


  • 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, ask about:


After spinal RT also check:



Always Check:

  • Blood pressure
  • Weight and height (Body Mass Index)
  • Scalp for alopecia/thinning of hair within previous RT field
  • Scalp skin for skin cancers (e.g. basal cell carcinoma and rarely melanoma)
  • Examine neck to exclude thyroid nodules
  • Visual acuity, visual fields, signs of Parinaud's syndrome and fundoscopy
  • General examination of respiratory, cardiovascular and GI systems


After spinal RT also check:


Neurocognitive testing
  • If there are problems like a poor short term memory, it may be important to document higher mental function formally to obtain vocational or recreational rehab & to be eligible for a disability pension


Blood work


After chemotherapy also check:

  • Serum magnesium and phosphate (chemotherapy related renal damage)


Radiology screening
  • MR of the head at least every 3 years or so in long term follow up to exclude RT induced meningiomas
  • Ultrasound scan of the thyroid every 3 years after cranial and craniospinal RT to exclude thyroid carcinoma
  • Also excludes late tumor recurrence




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

  • Endocrinology
  • Ophthalmologist/Neuro-ophthalmology


Hearing assessment
  • Referral to an audiologist every 1 - 2 years for audiology testing


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)
  • Increased risk of skin cancer within previous RT field


Early screening for osteoporosis (bone density)



ACTH deficiency:

  • Survivors of pineal tumors are at risk for hypopituitarism and ACTH deficiency.  During infection, surgery and illness survivors of pineal tumors may need support with extra steroid medication.
  • Medic Alert bracelets are advised to warn about ACTH deficiency



  • Advise about diet, exercise and lifestyle choices (such as smoking) which may further increase the risk of vascular disease
  • Avoid sunburn, use sun screen and wear a hat in bright sunlight to protect skin


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

Children's Oncology Group

long term follow up guidelines:






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