A haemangioblastoma is a rare type of brain tumour that usually affects the blood (‘haem’) vessels in the brain or sometimes in the spinal cord.
The information here should ideally be read with our general information about brain tumours and spinal cord tumours.
We hope this information answers your questions. If you have any further questions, you can ask your doctor or nurse at the hospital where you are having treatment.
The brain and spinal cord make up the central nervous system (CNS). The brain controls different functions of the body, including how we think, feel, learn and move. The spinal cord is made up of nerves that run down the middle of the back (spine). Messages between the brain and other parts of the body travel through the spinal cord.
A tumour can be benign (not cancer) or malignant (cancerous). A benign brain tumour can cause problems as it grows if it presses on surrounding tissue, but it can’t spread to other parts of the brain. A malignant tumour can cause problems by growing into nearby tissues and may spread to other parts of the CNS.
A haemangioblastoma develops in the very early cells that line the blood (haem) vessels in the brain or in the spinal cord. It is usually a slow-growing benign tumour. Haemangioblastomas usually start in the cerebellum and less commonly in the brain stem or spinal cord (see diagram).
Causes of haemangioblastomaBack to top
For most people 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’s often more than one tumour.
Symptoms of haemangioblastomaBack to top
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 haemangioblastomaBack to top
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 (computerised tomography) scan
A CT scan takes a series of x-rays that build up a three-dimensional picture of the inside of the body. The scan is painless and only takes a few minutes. CT scans use small amounts of radiation, which will be very unlikely to harm you or anyone you come into contact with.
You may be given an injection of a dye, which allows particular areas to be seen more clearly. This may make you feel hot all over for a few minutes. If you’re allergic to iodine or have asthma, you could have a more serious reaction to the injection, so it’s important to let your doctor know beforehand.
MRI (magnetic resonance imaging) scan
This test is similar to a CT scan but uses magnetism instead of x-rays to build up a detailed picture of areas of your body. Before the scan you may be asked to complete and sign a checklist. This is to make sure it’s safe for you to have an MRI scan. Before having the scan, you’ll be asked to remove any metal belongings, including jewellery.
Some people are given an injection of dye into a vein in the arm. This is called a contrast medium and can help the images from the scan show up more clearly. During the test you will be asked to lie very still on a couch inside a long cylinder (tube) for about 30 minutes. It’s painless but can be slightly uncomfortable and some people feel a bit claustrophobic during the scan. It’s also noisy, but you’ll be given earplugs or headphones.
This test uses an injection of a dye and x-rays to see the blood vessels in the brain that supply the tumour. The dye is injected through a thin, flexible tube (catheter) that is inserted into an artery in the groin, arm or neck. A series of x-rays are taken. Angiograms can be done as part of a CT or MRI scan.
Your nurse or doctor will explain this test in more detail.
Treatment for haemangioblastomaBack to top
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 may be given drugs called steroids to bring it down. Some people may have an operation to put a tube (shunt) into the brain to drain off the extra fluid before treatment starts.
Where possible, surgery is the main treatment for haemangioblastoma. In most cases, they are completely removed with surgery.
Your surgeon will explain what the operation will involve. They will talk to you about the possible complications and risks.
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.
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.
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.
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. Targeted beams of radiotherapy are given from different angles and cross at the point of the tumour. This allows larger doses of to be given precisely to the tumour and very low doses to the surrounding tissues. Stereotactic radiotherapy can be given as individual sessions over a number of weeks.
This type of radiotherapy is more suitable for small tumours.
Treatments to control symptoms
Steroid are drugs that help to reduce the swelling around a tumour. You may have them to treat raised pressure in the brain or after surgery or 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.
Being diagnosed with a brain tumour may feel very frightening at times. You may have many different emotions, including anxiety, anger, fear, feeling low or depressed. Many people go through these in coping with their illness.
It’s important to get the support you need. You may find it helpful to talk things over with family and close friends and with your doctor or nurse. You can also talk to one of our cancer support specialists. Sometimes people need more help to cope with difficult feelings of anxiety or depression. Your doctor can refer you to a counsellor or psychologist for more support.
You may not be allowed to drive for a period of time, depending on the treatment you have had and whether you have had any seizures (fits). Although this can be upsetting it’s important to follow the advice you are given. Your doctor will ask you to contact the Driver & Vehicle Licensing Agency (DVLA). It is your responsibility to contact the DVLA. Your doctor or nurse will explain what you need to do.
You can contact the DVLA by phone on or on the DVLA website.
This information has been compiled using information from a number of reliable sources, including:
- Packer R, Schiff D (Eds). Neuro-oncology. 2012. Wiley-Blackwell.
- Kaye A, Laws E. Brain Tumors (3rd edition). 2011. Saunders Elsevier.
- Bernstein M, Berger M. Neuro-oncology - The Essentials (2nd edition). 2008. Thieme.
- Wong E, et al. UpToDate. 28 September 2012 (accessed April 2014).
Thanks to Mr Andrew Brodbelt, Consultant Neurosurgeon, and the people affected by cancer who reviewed this edition.
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