Haemangioblastoma

A haemangioblastoma is a rare, slow growing brain tumour. It starts in the cells lining the blood vessels in the brain and sometimes in the spinal cord. People with a genetic condition called von Hippel-Lindau disease have a higher risk.

Symptoms may include headaches, vomiting, problems with coordination and balance, and jerky eye movements. A tumour in the spinal cord can cause back or neck pain or numbness in the arms or legs.

To find out more about the tumour, your doctor will arrange different tests. You usually have a MRI scan or a CT scan and an angiogram, which looks at the blood vessels in the brain.

Treatment depends on the size and position of the tumour and your general health. Your specialist will talk to you about the best treatment plan for you and explain the benefits and disadvantages.

Surgery is usually the main treatment. Radiotherapy can be used instead of or after surgery. Your doctor may prescribe steroids to reduce symptoms. They will explain what to expect and how treatment side effects can be managed.

Understanding haemangioblastoma

Haemangioblastomas develop in the cells that line the blood (haem) vessels in the brain or in the spinal cord. They usually start in the cerebellum and less commonly the brain stem or spinal cord.

A haemangioblastoma is a slow-growing tumour. They are sometimes called benign tumours (not cancerous). Your doctor may be more likely to talk to you about the “grade” of the tumour. The grade gives an indication to how slowly or quickly the tumour may grow.

A slow growing (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 (high grade) to grow into other parts of the brain.

It’s best to read this information along with our general information about brain tumours which has more detailed information about tests and treatments. We also have more information about spinal cord tumours.


Causes of haemangioblastoma

The cause of haemangioblastoma is not known. People with a rare hereditary (genetic) condition known as von Hippel-Lindau disease (VHL) have a greater risk. About a quarter of haemangioblastomas are linked to VHL. In these cases, the haemangioblastoma usually affects younger people and there is often more than one tumour.


Symptoms of haemangioblastoma

Haemangioblastomas are slow-growing tumours, and symptoms may develop slowly.

The first symptoms may be due to increased pressure in the brain (called raised intracranial pressure). This can be because of swelling around the tumour, or a build-up of cerebrospinal fluid (CSF) that surrounds and protects the brain and spinal cord. The symptoms of raised intracranial pressure are headaches, sickness (vomiting), problems with balance and with sight, and being confused.

Some other possible symptoms are:

  • changes in mood and personality
  • problems with coordination and balance
  • unusual or jerky eye movements.

If the tumour is in the spinal cord, it may cause symptoms such as back or neck pain, and numbness or weakness in the arms or legs.


Tests 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 the best treatment for you. You will have a number of different tests.

The doctor will examine you and do checks on your nervous system. This includes checking your reflexes and the power and feeling in your arms and legs. They also shine a light at the back of your eyes to check if the optic nerve is swollen, which can be a sign of raised pressure in the brain. Your doctor will ask some questions to check your reasoning and memory. You will also have blood tests taken to check your general health and to see how well your kidneys and liver are working.

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

CT scan

A CT (computerised tomography) scan uses x-rays to build a three-dimensional picture of the inside of the body. You may be given either a drink or injection of dye. This is to make certain areas of the body show up more clearly. We have more detailed information about having a CT scan.

MRI scan

This scan uses magnetism to build up a detailed picture of areas of your body. You may be given an injection of dye, into a vein, to improve the images from the scan. We have more detailed information about having an MRI scan.

Angiogram

This test uses an injection of a dye and x-rays to see the blood vessels in the brain that supply the tumour. Angiograms can be done as part of a CT or MRI scan. Or, you can have an injection of dye through a thin, flexible tube (catheter) inserted into an artery in your groin, arm or neck. After this you have a series of x-rays taken.

Your nurse or doctor will explain this test in more detail.


Treatment for haemangioblastoma

The main treatments for haemangioblastomas are surgery and radiotherapy. Your treatment will depend on the size and position of the tumour, your symptoms and general health.

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

Deciding on the treatments that are right for you is a decision you make in partnership with your doctor. Make sure you have enough information and time to help you make treatment decisions.

If the pressure in the brain is raised due to a build-up of cerebral spinal fluid (CSF), you will be given drugs called steroids to reduce the pressure. Some people may have an operation to put a tube (shunt) into the brain to drain off the extra fluid before treatment starts.

Surgery for haemangioblastoma

Where possible, surgery is the main treatment for haemangioblastoma. In most cases, they are completely removed with surgery.

But sometimes an operation is not possible. This may be because the position of the tumour makes it too difficult to reach and surgery would not be safe. For example, when the tumour is in the brain stem, radiotherapy can be used instead.

Your surgeon will explain what the operation will involve. They will talk to you about the possible complications and risks.

Some people may need extra support to help with their recovery. This may be from a physiotherapist who can help you to improve your balance, walking or strength. Occupational therapists can provide equipment and help you be more independent. Other services such as speech therapy or psychological support are also available.

It can take a while to recover after surgery so it’s important to take good care of yourself. Get plenty of rest, try to eat well and follow the advice given by your surgeon and specialist nurse.

We have more information about surgery to treat tumours in the spinal cord.

Radiotherapy for haemangioblastoma

Radiotherapy treatment uses high energy x-rays to destroy the cancer cells. It may be used if surgery is not possible, or after surgery if it was not possible to remove the tumour completely.

Newer methods of radiotherapy used for haemangioblastoma include stereotactic radiotherapy (SRT). This type of radiotherapy is more suitable for small tumours. Targeted beams of radiotherapy are given from different angles and cross at the point of the tumour. This allows larger doses to be given precisely to the tumour. Very low doses are given to the surrounding tissues, which helps to reduce the side effects. You have SRT is given as individual sessions over a number of weeks. Your cancer doctor (oncologist) will tell you how long your treatment will last and the type of radiotherapy you will have.

Radiotherapy makes you feel very tired and this can carry on for weeks or longer after it finishes. Get plenty of rest but try to balance this with some gentle activity such as short walks. This can help you to feel less tired.

The skin in the treated areas may become itchy and red or darker. You will lose the hair in the area being treated. This usually grows back again after 2-3 months.

Your cancer doctor and specialist nurse will talk to you about the side effects of radiotherapy and how they are managed. They will also explain the risk of late side effects. These are side effects that sometimes start months or years after radiotherapy.

Treatments to control symptoms

Steroids are drugs that help to reduce the swelling around a tumour. You may have them to treat raised pressure in the brain before or after surgery or during radiotherapy. Some of the side effects of include: indigestion, weight gain, restlessness, agitation and sleep disturbance. Let your doctor or nurse know if these are causing problems or you notice any other effects. Taking steroids with food can help reduce indigestion.

If you have seizures (fits) you will be given drugs called anticonvulsants to help prevent them.

It’s very important to take these drugs exactly as your specialist doctor has prescribed them.


Driving

You may not be allowed to drive for a period of time. Although this can be upsetting, it’s important to follow the advice you are given.

You will need to contact the Drivers and Vehicle Licensing Association (DVLA) if you live in England, Scotland or Wales. If you live in Northern Ireland you will need to contact the Driver and Vehicle Agency (DVA). They will advise you of any restrictions on your right to drive:

  • The Drivers and Vehicle Licensing Agency (DVLA) has information about driving with a medical condition if you live in England, Scotland or Wales. Visit GOV.UK or call 0300 790 6806.
  • The Driver and Vehicle Agency (DVA) has information about driving with a medical condition if you live in Northern Ireland. Visit nidirect or call 0845 4024 000.

If you’re not sure what you should do, check with your cancer doctor or specialist nurse. They will explain things to you.


Follow-up

After your treatment has finished, you’ll have regular check-ups, tests and scans. These appointments are a good opportunity to talk to your doctor about any worries or problems you have.

Many people find they get very anxious before appointments. This is natural. It can help to get support from family, friends, your specialist nurse or one of the organisations listed on our database. You can also talk things over with one of our cancer support specialists on 0808 808 00 00.