Pediatric Oncology
Education Materials

• 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:

• Blood pressure
• Weight and height Body Mass Index - BMI
• Eye exam: Visual acuity, visual fields and fundoscopy
• Scalp for sparse hair within previous RT field and skin cancers such as basal cell carcinomas
• Examine neck to exclude thyroid nodules
• General examination

• 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

• Assessment of pituitary function should be supervised by an endocrinologist (Panhypopituitarism is extremely common in these patients with GH as well as ACTH, TSH, FSH & LH deficiency - diabetes insipidus is rare)
• Thyroid function tests (at least free T4 and TSH)
• Routine blood work including CBC, lytes, creatinine and LFTs
• Hepatitis C testing if given blood products before 1994
• Testing for metabolic syndrome: Fasting blood glucose & lipids

• MR of the head at least every 1 - 2 years or so to exclude late recurrence and RT induced meningioma
• Ultrasound scan of the thyroid every 3 years to exclude thyroid cancer

Specialist

follow-up

Assessment by the following specialists every year:

• Endocrinology
• Ophthalmology or Neuro-ophthalmology

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

Lifestyle:

• 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:

• Educational issues
• Emotional issues
• Eye health
• Cataracts
• Hearing loss
• Growth hormone deficiency
• Central adrenal insufficiency
• Hypopituitarism
• Thyroid problems
• Reducing the risk of second cancers