Read out about craniopharyngioma and how it is treated.
What it is
Craniopharyngiomas are very rare benign brain tumours.
These tumours usually grow near the base of the brain, just above the pituitary gland. They are most often diagnosed in children, teenagers, and young adults.
Cariopharyngiomas do not usually spread, but they occur close to important structures in the brain and can cause problems as they grow. They can cause changes in hormone levels, and problems with eyesight. Children with craniopharyngioma can have weight gain and growth problems.
Your doctor will examine you and you might have blood tests to check your general health. Other tests include:
- CT or MRI scan
- a biopsy
Your surgeon will try to remove as much tumour as possible. Some tumours are filled with fluid. They are called cystic tumours and cannot usually be completely removed.
- remove some of the tumour
- decompress any cyst or insert a tube to remove fluid from a cystic tumour
- create a tunnel from the tumour into one of the natural fluid filled spaces in the brain (ventricles)
You usually have radiotherapy after surgery. This tries to stop the tumour from coming back. For very small tumours you might have stereotactic (targeted) radiotherapy.
You might have radiotherapy if your tumour comes back and you have not already had radiotherapy. This might slow down the growth of the tumour.
Coping with craniopharyngioma
Coping with a diagnosis of a brain tumour can be difficult, both practically and emotionally. It can be especially difficult if you have a rare brain tumour. Being well informed about your tumour and its treatment can make it easier to make decisions and cope with what happens.
You will have regular check ups once you finish your treatment. Your doctor will examine you and ask about your general health.
This is your chance to ask questions and to tell your doctor if anything is worrying you.
How often you have check ups depends on your individual situation.
Research and clinical trials
There may be fewer clinical trials for rare types of cancer than for more common types.
It is hard to organise and run trials for rare cancers. Getting enough patients is critical to the success of a trial. The results won't be strong enough to prove that one type of treatment is better than another if the trial is too small.
The International Rare Cancers Initiative (IRCI) aims to develop more research into new treatments for rare cancers. They are designing trials that involve several countries so that more people will be available to enter trials.