Craniopharyngiomas are benign brain tumours (not a cancer). They can affect children and adults.
Craniopharyngiomas usually grow near the base of the brain, just above the pituitary gland. The pituitary gland makes hormones that control important body functions.
Craniopharyngiomas do not usually spread. Because they grow close to the pituitary gland, they can cause changes in the way that it works. Symptoms of craniopharyngiomas include:
- changes in hormone levels. In adults this might cause difficulty getting an erection and irregular periods. It can also cause growth problems in children and diabetes
- loss of eyesight
- a build up of pressure in and around the brain, which can cause feeling or being sick
Symptoms can develop suddenly, which means that you feel unwell quickly or they can develop more slowly.
How common it is
Craniopharyngiomas are rare tumours. In children, between 6 and 13 out of every 100 brain tumours (6 to 13%) are craniopharyngiomas. And in adults, between 1 and 3 out of every 100 brain tumours (1 to 3%) are craniopharyngiomas.
What tests will I have?
To find out what is causing your symptoms your doctor will arrange for you to have some tests. The tests you might have include:
- blood tests to look at the levels of hormones
- MRI scan or CT scan
- eye examinations
- a biopsy
As well as finding out whether you have a tumour, the tests check the size of the tumour and its location. This helps your doctor plan your treatment.
Most people have surgery. You might need radiotherapy after surgery if your surgeon hasn’t been able to remove all of the tumour. You might also need hormone replacement therapy if you have changes in the levels of hormones.
A brain specialist surgeon (neurosurgeon) removes all the tumour or just a part depending on where the tumour is. They will discuss with you the side effects they think you will have after the operation.
Some tumours are close to important parts of the brain such as the optic nerve and the hypothalamus. These tumours cannot usually be completely removed.
The side effects you might have after the operation include:
- changes in the hormone levels
- high blood sugar levels (diabetes)
- changes in vision
- weight gain
- behaviour changes
You usually have radiotherapy after surgery. This is to try to stop the tumour from coming back. You might also have radiotherapy if the tumour comes back.
For small tumours, you might have stereotactic radiotherapy or radiosurgery. Both treatments target high doses of radiotherapy to the tumour.
Some people may also have a type of radiotherapy called proton beam therapy. It uses high energy or low energy proton beams to treat cancer.
Many people with a craniopharyngioma have changes in their hormone levels. This is due to either the tumour itself or as a side effect of treatment.
You might need to take hormone replacement therapy to help with this. The type of hormone you take depends on your individual needs.
You have regular appointments with your doctor or nurse after treatment finishes. Your doctor examines you at each appointment. They ask how you are feeling, whether you have had any symptoms or side effects and if you are worried about anything. You might also have MRI scans on some visits.
How often you have check ups depends on your individual situation. Most people have a check up every 6 to 12 months, for up to 5 years.
Coping with craniopharyngioma
Coping with a diagnosis of a brain tumour can be difficult, both practically and emotionally. It can be especially difficult when you have a rare tumour. Being well informed about the type of tumour you have, and its treatment can make it easier to cope.
Research and clinical trials
Doctors are always trying to improve the diagnosis and treatment of brain tumours. As part of your treatment, your doctor might ask you to take part in a clinical trial. This might be to test a new treatment or look at different combinations of existing treatments.