Craniopharyngioma

Craniopharyngiomas are a rare type of brain tumour.

A craniopharyngioma is a non-cancerous (benign) tumour. A benign tumour can cause problems as it grows by pressing on surrounding tissue. But it does not spread from where it started to other parts of the brain. Craniopharyngiomas usually grow slowly.

Craniopharyngiomas usually start in an area at the base of the brain above the pituitary gland. 

This information is about craniopharyngioma in adults. For information about brain tumours in children, contact the Children’s Cancer and Leukaemia Group.

Craniopharyngiomas can affect people of any age, but are more common in children and older people.

The cause of craniopharyngioma is unknown, but research is being done to find out more.

We have more information about risk factors and causes of brain tumours.

Treatments used for craniopharyngiomas may include surgery and radiotherapy.

A team of specialists will plan your treatment. Your specialist doctor and nurse will explain the aims of your treatment and what it involves. They will talk to you about the benefits and disadvantages of different treatment types. They will also explain the risks and side effects.

You may be given a choice of treatment options. You will have time to talk about this with your hospital team before you make any treatment decisions.

You will need to give permission (consent) for the hospital staff to give you the treatment. Ask any questions about anything you do not understand or feel worried about. Tell your specialist if you need more information or more time to decide on a treatment.

You may have surgery to remove all of the tumour, or as much of it as possible. Your surgeon will explain your operation and what to expect.

How the surgery is done depends on the exact position of the tumour and the areas of the brain affected by it.

Sometimes the surgeon uses small surgical instruments to operate through the back of your nose. This is called transsphenoidal surgery.

Radiotherapy uses high-energy rays to destroy the tumour cells. You may have radiotherapy:

• after surgery, if the tumour cannot be completely removed
• as your main treatment, if surgery is not possible
• if the tumour comes back.

A type of radiotherapy called stereotactic radiotherapy (SRT) can sometimes be used to treat craniopharyngiomas.

You may need treatment for the symptoms of a craniopharyngioma before you have any treatment for the tumour. You may also need your symptoms managed during your main treatment or for a while after it has finished.

Craniopharyngiomas can be solid, but they are often filled with fluid (cysts). The tumour may swell if the fluid-filled (cystic) part starts making extra fluid. This can make your symptoms worse because the tumour may press on nearby areas of the brain.

Treatments for symptoms include:

• drugs called steroids
• surgery to place a long, thin tube called a shunt – this lets some of the fluid drain from the brain to another area of the body, to reduce pressure inside the skull
• a small operation to place an ommaya reservoir.

An ommaya reservoir is a small disc that sits under the skin of the scalp. It has a tube that goes into the fluid-filled part of the tumour.

When needed, your doctor can drain some fluid from the tumour by putting a small needle through the skin into the disc. They can also use the disc to inject chemotherapy or radioisotope treatment into the tumour to help shrink it.

After your treatment has finished, you will have regular check-ups, tests and scans.

Some side effects can start months or years after treatment has finished. You can use your follow-up appointments to talk about these side effects, or about any other worries or problems you have.

Many people find they get very anxious before appointments. This is natural. It may help to get support from family, friends or a specialist nurse.