Improving Brain Tumour Care surveys share your experiences and help create change

Haemangioblastoma

Haemangioblastomas are tumours that grow from blood vessel cells. They are low grade, very slow growing and do not spread. But they can grow in the brain stem and then they are very difficult to treat. They represent about 2% of brain tumours.

On this page, we’ll cover:

What is a haemangioblastoma?

Haemangioblastoma is a slow growing brain tumour that is most common in ages between 20 and 40. It could appear anywhere in the brain but it is found most often in the posterior fossa area including the cerebellum and brainstem. This area is located at the lower and lower back of the brain. 

Four booklets from The Brain Tumour Charity information pack spread out on a wooden table

Get your free Information Pack

If you or someone you love has been diagnosed with a brain tumour and you don’t know which way to turn, start with our free Information Pack.

What are the causes of haemangioblastoma?

While the causes of most brain tumours are unknown and not linked to one specific genetic disease, around a quarter of haemangioblastoma cases are directly linked to Von Hippel-Lindau disease.

This is a genetic condition which causes vascular abnormalities and increased risk of cancer in other parts of the body.

Haemangioblastomas linked to this disease are more likely to recur after surgery.

What are the symptoms of haemangioblastoma?

The symptoms of the tumour depend largely on its position within the brain but are often:

  • Problems with walking, balance and coordination
  • Intense headaches due to hydrocephalus (a build-up of fluid in the brain)

If the tumour is located in the brainstem there is more chance of symptoms being severe and needing emergency attention. This is because all the nerves going from the brain to the rest of the body pass through it. A rupture of a blood vessel will also require immediate medical attention.

How are haemangioblastomas treated?

Depending on the tumour, its location, and the person affected, haemangioblastomas can be treated in a number of different ways. These are:

Watch and wait

Because they are quite slow growing, haemangioblastomas are often treated conservatively. This means they can be put on active monitoring, or ‘watch and wait’. This means that there won’t be any treatment right away, but the tumour will be monitored with scheduled check-ups.

Surgery and radiotherapy

If it is decided that treatment is required, it could be a combination of surgery and radiotherapy. This would likely involve surgery to remove the tumour followed by stereotactic radiotherapy to treat the parts of the tumour that couldn’t be removed during surgery.

Chemotherapy

Sometimes chemotherapy may be used as treatment or alongside other types of treatment. This can sometimes be recommended for tumours that have grown back due to Von Hippel-Lindau disease.

If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
Support and Information Services
0808 800 0004 Free from landlines and mobiles
Phone lines open Mon-Fri, 09:00-17:00

In this section

Check the signs and symptoms of a brain tumour

Get support

If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.

Share your experiences and help create change

By taking part in our Improving Brain Tumour Care surveys and sharing your experiences, you can help us improve treatment and care for everyone affected by a brain tumour.