Learn about haemangioblastomas and how they are treated.
What it is
About 2 out of 100 (2%) of brain tumours are haemangioblastomas. They start from cells lining blood vessels in the brain. They are often slow growing and are usually limited to one part of the brain.
They most often start at the back of the brain (cerebellum).
Haemangioblastomas can be part of a rare inherited syndrome called von Hippel-Lindau syndrome. People with this syndrome have a higher risk of haemangioblastoma as well as other cancers. For example, eye cancer or kidney cancer.
Your doctor will examine you and you may have blood tests to check your general health. Other tests include:
- CT or MRI scan
- neurological examination by your doctor
It might be possible to remove the whole tumour during surgery. This may not be possible if:
- your tumour has spread to surrounding brain tissue
- your tumour is on or very near the brain stem
You might have radiotherapy if:
- the tumour has not completely been removed after surgery
- surgery is not possible because of the tumour's position in the brain
- your brain tumour has come back after treatment
- you are not fit or well enough to have surgery
You might have a type of radiotherapy called stereotactic radiotherapy. This is most often used as the main treatment for small tumours. Or for haemangioblastoma that has come back after treatment.
Coping with haemangioblastoma
Coping with a diagnosis of a brain tumour can be difficult, both practically and emotionally. It can be especially difficult if you have a rare tumour. Being well informed about your tumour and its treatment can make it easier to make decisions and cope with what happens.
You will have regular check ups once you finish your treatment. Your doctor will examine you and ask about your general health.
This is your chance to ask questions and to tell your doctor if anything is worrying you.
How often you have check ups depends on your individual situation.
Research and clinical trials
There may be fewer clinical trials for rare types of cancer than for more common types.
It is hard to organise and run trials for rare cancers. Getting enough patients is critical to the success of a trial. The results won't be strong enough to prove that one type of treatment is better than another if the trial is too small.
The International Rare Cancers Initiative (IRCI) aims to develop more research into new treatments for rare cancers. They are designing trials that involve several countries so that more people will be available to enter trials.