Craniopharyngioma in children — what parents need to know

Technically, no — most craniopharyngiomas are classified as benign (non-cancerous) or low-grade tumours. They do not invade surrounding brain tissue the way malignant cancers do, and they very rarely spread to other parts of the body. However, the word “benign” can be misleading here: because a craniopharyngioma sits in a highly sensitive location near the pituitary gland, hypothalamus, and optic nerves, it can still cause serious and lasting effects on hormones, vision, weight, and cognition — even when it is not cancerous. The goal of treatment is to control the tumour while protecting these critical nearby structures as much as possible.

Symptoms usually develop gradually because the tumour grows slowly. The most common signs parents notice include persistent headaches (often worst in the morning), unexplained vision changes such as blurring, loss of side vision, or a squint, and slower-than-expected growth in height despite normal nutrition. Children may also drink and urinate much more than usual, feel excessively tired, or show unexpected weight gain without a clear dietary reason. In younger children, increasing head size or general irritability may be the first sign. Any child with unexplained vision changes alongside headaches, or who has stopped growing normally, deserves a prompt medical assessment.

Diagnosis begins with a clinical assessment, including measurement of height and weight over time and a careful eye examination. Blood and urine tests check for hormonal imbalances that the tumour may have caused. The key imaging investigation is an MRI of the brain with contrast, which shows the tumour’s exact size, location, and relationship to the pituitary gland, optic nerves, and hypothalamus. CT scanning may also be done, as it can reveal calcium deposits inside the tumour that are characteristic of the childhood (adamantinomatous) type. In most cases, a diagnosis can be strongly suspected from imaging alone, though surgical pathology confirms it.

Treatment depends on the tumour’s size, location, type, and the degree to which it involves the hypothalamus. Surgery to remove as much of the tumour as safely possible is the most common first step. In some cases — particularly when the tumour is tightly attached to the hypothalamus — a less complete removal (leaving a small remnant) followed by radiation therapy may preserve more of the child’s hormonal and cognitive function than attempting total removal. Radiation therapy (sometimes including stereotactic approaches) is used when surgery alone is not sufficient. Every child’s case is reviewed at CION’s multidisciplinary tumor board before a recommendation is made — decisions are never rushed.

Many children will need some form of hormonal supplementation after treatment for a craniopharyngioma. Because the pituitary gland and hypothalamus regulate almost every hormone in the body — including growth hormone, thyroid hormone, cortisol, and the hormone that controls water balance (ADH) — damage from the tumour or its treatment can cause deficiencies that need lifelong or long-term replacement. This is not a failure of treatment; it is an expected part of managing a tumour in this location. Regular follow-up with a paediatric endocrinologist becomes a permanent part of care, and children on hormonal replacement can lead full, active lives.

Yes, recurrence is one of the main challenges with craniopharyngiomas, and it is the reason long-term follow-up is so important. The rate of recurrence depends on how much tumour was removed and whether radiation was used. Tumours that were only partially removed without radiation are more likely to regrow. Regular MRI scans — typically every 3–12 months initially and then annually for many years — are essential to detect any regrowth early, when it is more manageable. If a recurrence is found, the specialist team will discuss the options at that stage, which may include re-operation, radiation, or other approaches.