Craniopharyngioma

A craniopharyngioma is a non-cancerous (benign) tumour. It is a rare type of brain tumour, that usually grows slowly. 

A benign tumour can cause problems as it grows by pressing on surrounding brain tissue. But it does not spread from where it started to other parts of the brain.

The tumour usually starts in an area near to the base of the brain above a gland called the pituitary gland. This gland produces hormones which help control how the body works.

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

This information is about craniopharyngioma in adults. The Children’s Cancer and Leukaemia Group has more information on caring for children with cancer, including brain tumours. The The Brain Tumour Charity also has information about brain tumours in children.

The causes of craniopharyngiomas are 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 a craniopharyngioma may include surgery and radiotherapy.

A team of specialists will plan your treatment. Your specialist doctor and specialist nurse will explain the aims of your treatment and what it involves. They will talk to you about the benefits and risks of different treatment types. They will also explain the 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 be offered surgery The aim of surgery is remove as much of the tumour as is safely possible and improve symptoms. Your surgeon will explain your operation and what to expect. 

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

The surgeon usually uses small surgical instruments to operate through the back of your nose. This technique can reach the hollow space behind the nasal passages in the skull, below the brain. This is called an endoscopic transsphenoidal surgery.

Another type of surgery that may be offered is an operation called a craniotomy. This is when a small opening in the skull is made to remove the tumour. Sometimes, more than 1 operation is needed.

Radiotherapy uses high-energy rays to destroy the tumour cells and control the tumour. 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.

There are different types of radiotherapy. They all work in a similar way and aim to target the tumour while avoiding healthy tissue nearby. Types of radiotherapy might include IMRT (intensity modulated radiotherapy), VMAT, SRT (stereotactic radiotherapy) and proton beam therapy.

The type of radiotherapy used will depend on the position of the tumour and your individual situation. Your doctor can explain to you more about the type of radiotherapy.

Your specialist doctor or nurse will explain your treatment and possible side effects.

The tumour and the treatments used to control it can cause ongoing symptoms and side effects. For some people these can continue and may be permanent. Your doctor will explain what is most likely for you. Changes may include the following:

• Symptoms of hormone imbalances if the pituitary gland and nearby areas have been affected. You will meet a doctor who treats hormone problems (an endocrinologist) regularly after your treatment.
• Eyesight problems caused by damage to the optic nerve. You may see an eye specialist called an ophthalmologist. They can help you manage any changes to your vision.

We have more information about coping with side effects of treatment and changes caused by a brain tumour.

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.

Clinical trials are a type of medical research involving people. They are important because they show which treatments are most effective and safe. This helps healthcare teams plan the best treatment for the people they care for.

Trials may test how effective a new treatment is compared to the current treatment used. Or they may get information about the safety and side effects of treatments.

They will give you information about the clinical trial so that you understand what it means to take part. If you decide not to take part in a trial, your specialist doctor and nurse will respect your decision. You do not have to give a reason for not taking part. Your decision will not change your care. Your doctor will give you the standard treatment for the type of tumour you have.

Clinical trials also research other areas. These include diagnosis and managing side effects or symptoms. As these tumours are rare, there may not always be a relevant clinical trial happening. If there is, your doctor or nurse may ask you to think about taking part.

We have more information about clinical trials.