What is a Haemangioblastoma?

Haemangioblastomas (hemangioblastoma) are a rare type of tumour that form from the cells that line the blood vessels in the brain and spinal cord. They grow slowly over a number of years, and most commonly start in the cerebellum at the back of the brain.

Haemangioblastomas are non-cancerous (low-grade) tumours, which means that they do not spread to other parts of the body or invade nearby tissues. However, they can press on surrounding brain or spinal cord tissue, causing neurological symptoms such as headaches, dizziness, and difficulty with coordination or balance. In rare cases, haemangioblastomas can become high-grade (malignant) and spread to other parts of the body, but this is very uncommon.

Haemangioblastomas can occur sporadically (randomly) or as part of a genetic condition called Von Hippel-Lindau (VHL) disease. Around 1 in every 100 brain tumours are haemangioblastomas (Cancer Research UK).

Haemangioblastomas are typically treated with surgery, radiation therapy, or a combination of both.

What are the common symptoms of a haemangioblastoma?

Haemangioblastomas are slow-growing tumours, and symptoms can appear slowly. The symptoms may depend on where in the brain the tumour has developed, but can commonly include:


Feeling or being sick

Blurred vision

Problems with coordination and balance

Weakness in an arm or a leg

With haemangioblastomas, patients can develop a build-up of fluid in the brain, known as hydrocephalus, which can result in intense headaches.

If the tumour is located in the spinal cord/brainstem, then the symptoms may include back or neck pain, numbness in limbs, difficulty walking and problems with bladder control. Due to the location of this tumour, the symptoms may be more severe and need emergency attention.

What is the treatment for haemangioblastoma in the UK?

Treatment for haemangioblastoma depends on the location of the tumour, how fast the tumour is growing and how it is affecting the patient. The treatment plan may include monitoring, surgery or radiotherapy – all of which is decided on an individual basis.

Patients whose tumour is very small, not growing or has few symptoms may be offered a ‘watch and wait’ approach, which uses regular MRI scans to keep an eye on the tumour’s growth.

Surgery is the main treatment for haemangioblastoma. It is where, depending on the tumour's location, a neurosurgeon will remove all, or part, of the tumour. It can be curative if the whole tumour is removed, but the tumour can reoccur in some patients. 

Some patients may be offered radiotherapy as part of their treatment if they can’t have surgery (for instance their tumour is in an inaccessible place in the brain), the surgeons couldn’t remove all the tumour or the haemangioblastoma has returned following surgery. Patients may be offered stereotactic radiotherapy or radiosurgery.

In the UK, what is the prognosis for someone diagnosed with haemangioblastoma?

Haemangioblastomas can often be successfully treated with surgery, but this can depend on several factors, such as tumour location, size and health of the patient.

If the tumour was successfully removed, the recurrence rate can range from 3-10% [1].

For those patients whose tumour is part of the genetic condition Von Hippel-Lindau (VHL) disease, recurrence is more likely.

Frequently Asked Questions

Can haemangioblastoma be cured?

Haemangioblastomas can often be successfully treated, but the likelihood of a cure depends on several factors, such as the size and location of the tumour and the overall health of the patient.

In many cases, surgical removal of the tumour can be curative, especially if the tumour is small. However, if the tumour is located in a vital area of the brain or spinal cord, surgery may not be feasible or may carry a high risk of complications. In these cases, radiation therapy or other treatments may be used to slow the growth of the tumour and alleviate symptoms.

It's important to note that even after successful treatment, close monitoring may be necessary to watch for any signs of recurrence. Additionally, in cases where haemangioblastomas are associated with a genetic condition such as von Hippel-Lindau (VHL) disease, ongoing surveillance may be necessary to detect and treat any new tumours that may develop over time.

How rare are haemangioblastomas?

Haemangioblastoma is a rare type of tumourhaemangioblastomas occur in about 2 to 3 people per million per year. They are more common in adults than in children and are slightly more common in men than in women.

Haemangioblastomas can occur sporadically or as part of a genetic condition called von Hippel-Lindau (VHL) disease. VHL disease is a rare genetic disorder that affects about 1 in 36,000 people worldwide, and it is estimated that about 25-30% of people with VHL disease will develop a haemangioblastoma in their lifetime.

Overall, haemangioblastomas are considered to be a rare type of tumour, but they can still have a significant impact on the health and quality of life of those who are affected.

What age do people get haemangioblastoma?

Haemangioblastomas can occur at any age, but they are more commonly diagnosed in adults between the ages of 30 and 50.

In cases where haemangioblastomas are associated with a genetic condition such as von Hippel-Lindau (VHL) disease, the age of onset may be younger. VHL disease is an inherited condition that can increase the risk of developing haemangioblastomas as well as other types of tumours, and people with VHL disease may develop haemangioblastomas at a younger age.

What is the risk of having a bleed on the brain?

For small <1.5cm tumours the risk is practically zero. For tumours larger than this then the risk remains small <0.1% over lifetime but increases with the size.

How will having a haemangioblastoma affect my license to drive?

Most haemangioblastomas are located in the cerebellar area and hence do not increase the risk of having a seizure or epileptic fit. However, some tumours may affect your physical driving ability. Those with a diagnosis should notify the DVLA. Patients with asymptomatic tumours are able to return to driving directly. Those undergoing surgery or radiotherapy can usually return to driving on completion of treatment or recovery form surgery.