What is a haemangioblastoma?

A haemangioblastoma is a type of brain tumour. It usually starts in the cerebellum. Less commonly, it can start in the brain stem or spinal cord.

A haemangioblastoma is a rare, slow growing tumour. A haemangioblastoma is not cancer and may sometimes be called a benign tumour.

A slow growing haemangioblastoma is called a low-grade tumour. Faster growing tumours are called high-grade tumours. A low-grade tumour can still cause problems as it grows by pressing on surrounding tissue. But it is less likely than a faster growing tumour to grow into other parts of the brain.

Symptoms of a haemangioblastoma

Haemangioblastomas are slow growing tumours, and symptoms may develop slowly. As a tumour grows, it can press on or grow into nearby areas of the brain. This can cause symptoms because it stops that part of the brain from working normally. The first symptoms may be because the tumour is causing a build-up of pressure inside the skull. This is called raised intracranial pressure.

Common symptoms include:

  • headaches
  • feeling or being sick
  • blurred vision
  • problems with coordination and balance
  • weakness in an arm or a leg.

Other possible symptoms include:

  • drowsiness
  • changes in mood and personality
  • unusual or jerky eye movements.

If the tumour is in the spinal cord, it may cause symptoms such as:

  • back or neck pain
  • numbness or weakness in the arms or legs
  • difficulty walking
  • problems with bladder control.

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

Causes and risk factors of haemangioblastoma

The cause of haemangioblastoma is not unknown, but research is being done to find out more.

People with a rare inherited (genetic) condition called von Hippel-Lindau disease (VHL) have a greater risk. Only a small number of haemangioblastomas are linked to VHL. In these cases, the haemangioblastoma usually affects younger people and there is often more than one tumour.

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

Tests and diagnosis for haemangioblastoma

Your doctors need to find out as much as possible about the type, position and size of the tumour so they can plan your treatment.

You will have a MRI scan or CT scan to find out the exact position and size of the tumour.

Your doctor may also:

  • check your reflexes and the power and feeling in your arms and legs
  • shine a light at the back of your eye to check if there is swelling
  • ask you some questions to check your reasoning and memory
  • arrange for you to have blood tests to check your general health and to see how well your kidneys and liver are working.

You may also have an angiogram. This is a type of x-ray used to check the blood vessels in the brain that supply 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 The Brain Tumour Charity.

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 haemangioblastoma

The main treatments for haemangioblastoma are surgery and sometimes radiotherapy.

You may have a combination of treatments. Your treatment depends on:

  • the size and position of the tumour
  • the symptoms you have.

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

Where possible, you will have surgery to remove the brain tumour. Often this is the only treatment needed. We also have more information about surgery to treat tumours in the spinal cord.

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 radiosurgery (SRT) is sometimes used to treat haemangioblastoma. We have more information about SRT.

Side effects of treatment for haemangioblastoma

Your specialist doctor or nurse will explain your treatment and possible side effects. Most side effects are short term and will improve gradually when the treatment is over. Some treatments can cause side effects that do not get better. These are called long-term effects. You may also get side effects that start months or years later. These are called late effects. We have more information about coping:

Treatment for symptoms of haemangioblastoma

You may need treatment for the symptoms of a haemangioblastoma 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.

You may have:

  • steroids to reduce swelling around the tumour
  • surgery to drain fluid from the brain, to reduce pressure inside the skull.

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 your treatment for haemangioblastoma

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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