What is a 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.

Symptoms of craniopharyngioma

Craniopharyngiomas are usually slow growing. Symptoms often develop gradually over several years. The symptoms can depend on the part of the brain that is affected by the tumour.

Common symptoms include:

  • eye and sight problems
  • headaches
  • nausea and vomiting
  • tiredness and lack of energy.

The pituitary gland produces hormones which help control how the body works. If the tumour affects how the pituitary gland works, this can cause symptoms of changing hormone levels, such as:

  • irregular periods
  • loss of sex drive
  • difficulty getting or keeping an erection.

We have more information about possible symptoms of a brain tumour.

Causes of craniopharyngioma

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.

Diagnosis of craniopharyngioma

Your doctors need to find out as much as possible about the tumour so they can plan your treatment. You will have:

  • eye tests to check your eyesight and eye health
  • blood tests to check your hormone levels
  • brain MRI scan or a brain CT scan to find out the exact position and size of the tumour.

We have more about how brain tumours are diagnosed.

Getting support

Being diagnosed with a brain tumour can make you feel shocked, frightened, angry or upset. There is no right or wrong way to feel. Talking about your feelings can often help.

You may also want to get support from a brain tumour charity, such as:

How diagnosis affects your right to drive

Most people diagnosed with a brain tumour will not be allowed to drive for a time after their diagnosis. Your doctor, surgeon or specialist nurse will tell you if this applies to you. 

If you have a driving licence, you must tell the licensing agency you have been diagnosed with a brain tumour.

You could be fined if you do not tell them. You could also be prosecuted if you have an accident.

Treatment for craniopharyngioma

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.

Surgery

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

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.

Side effects of treatment for craniopharyngioma

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 will be permanent. Your doctor will explain what is most likely for you. Changes may include:

  • symptoms of hormone imbalances, if the pituitary gland and nearby areas have been affected
  • eyesight problems caused by damage to the optic nerve.

You will see a doctor who treats hormone problems (an endocrinologist) regularly after your treatment. You may also see an eye specialist. They can check for any problems and help you manage changes.

We have more information about coping with changes caused by a brain tumour.

Treatment for symptoms of craniopharyngioma

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

Clinical trials are medical research trials involving people. Doctors may use clinical trials to test new treatments, find new drugs, or improve the way treatments are given.

Because 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.

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.

We have more information about clinical trials.

After treatment for craniopharyngioma

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.

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