Haemangioblastoma
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What is a haemangioblastoma?
A haemangioblastoma is a type of brain tumour. It usually starts in a part of the brain called the cerebellum. Less commonly, it can start in the brain stem or spinal cord. It develops from the cells in the lining of a blood vessels.
Haemangioblastomas are rare. Tumours are usually slow-growing and low-grade (grade 1). A haemangioblastoma is not cancer and may sometimes be called a benign tumour. It usually does not spread to other parts of the brain. But a slow-growing haemanioblastoma can still cause problems when it presses on the surrounding brain.
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Symptoms of a haemangioblastoma
Symptoms may develop slowly, as the tumour presses on or grows into nearby areas of the brain. This can stop 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 or arms or legs and with 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.
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Causes and risk factors of haemangioblastoma
The cause of most haemangioblastomas is not known, 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 usually have brain scans to find out the exact position and size of the tumour.
You may have a brain CT scan first. You also usually have an MRI scan.
Having an MRI scan is important as it can give more detailed information. If you are not able to have an MRI scan, your doctor will discuss this with you. We have more information on the different types of MRI scans used to diagnose brain tumours.
Your doctor may also:
- do a physical examination of parts of your nervous system, such as checking your balance 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
- arrange for an ultrasound or CT scan of your abdomen (tummy).
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.
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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
- your symptoms.
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 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.
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Surgery
You may be offered surgery to remove the haemangioblastoma. Often this is the only treatment needed. We have more information about surgery to treat tumours in the spinal cord, and about what to expect before and after surgery.
Radiotherapy
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.
A type of radiotherapy called stereotactic radiosurgery (SRS) or stereotactic radiotherapy (SRT) is sometimes used to treat a haemangioblastoma. We have more information about SRS and SRT.
Your doctor can tell you if this might be suitable in your situation.
We have more information about coping with side effects of radiotherapy.
Side effects of treatment for haemangioblastoma
Your specialist doctor or specialist 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 continue and may 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.
Treatment for symptoms of a 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 the following treatments:
- Steroids to reduce swelling around the tumour.
- Surgery to drain fluid from the brain to another area of the body to reduce pressure inside the skull. This might be with an operation called endoscopic third ventriculostomy (ETV). It involves putting in a thin tube called an endoscope into the brain. This helps create a new channel to bypass the blockage of the cerebrospinal fluid (CSF).
Clinical trials
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.
After your treatment for haemangioblastoma
After your treatment has finished, you will have regular check-ups, tests and scans. How often you are seen and for how long may vary depending on the size of your tumour and the treatment you have had.
Appointments are usually more frequent to begin with.
You may continue to have some side effects from treatment. These may include tiredness, or problems with processing thoughts and ideas.
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. Your doctor or nurse may refer you to a neurological rehabilitation (neuro-rehab) service. This service may be able to refer you to a physiotherapist, speech and language therapist or occupational therapist and offer emotional support.
If you have any symptoms or side effects you are worried about, you can also contact your doctor or nurse between appointments.
Many people find they get anxious before appointments. This is natural. It may help to get support from family, friends or a specialist nurse.
How diagnosis affects your right to drive
Following diagnosis and treatment for a brain tumour, most people will not be allowed to drive for a period of time. If you drive, it is important to discuss with your doctor how your diagnosis and treatment for a brain tumour affects your right to drive.
If you have a driving licence, you must tell the licencing agency (DVLA or DVA) that you have been diagnosed with a brain tumour. We have more information about how a brain tumour may affect your right to drive.
Getting support
Being diagnosed with a brain tumour may cause a range of different emotions. There is no right or wrong way to feel. It may help to get support from family, friends or a support organisation.
Macmillan is also here to support you. If you would like to talk, you can:
- Call the Macmillan Support Line for free on 0808 808 00 00.
- Chat to our specialists online.
- Visit our brain cancer forum to talk with people who have been affected by brain tumours, share your experience, and ask an expert your questions.
Other organisations who can help
You may also want to get support from a brain tumour charity, such as:
About our information
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer.
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References
Below is a sample of the sources used in our information about haemangioblastoma. If you would like more information about the sources we use, please contact us at informationproductionteam@macmillan.org.uk
European Association of Neuro-Oncology and European Society for Medical Oncology (EANO-ESMO) Clinical Practice Guidelines for prophylaxis, diagnosis, treatment and follow-up: Neurological and vascular complications of primary and secondary brain tumours. 2021. Available from: Available from www.annalsofoncology.org/article/S0923-7534(20)43146-1/fulltext [accessed June 2024].
NICE Guideline NG99. Brain tumours (primary) and brain metastases in over 16s. 2018 (updated 2021). Available from: www.nice.org.uk/guidance/ng99 [accessed June 2024].
National Institute for Health and Care Excellence (NICE) Brain tumours (primary) and brain metastases in over 16s. Quality standard [QS203] Published: 07 December 2021. Neurological rehabilitation. Available from: www.nice.org.uk/guidance/qs203/chapter/quality-statement-5-neurological-rehabilitation#quality-statement-5-neurological-rehabilitation [accessed June 2024]
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