Haemangioblastoma
Haemangioblastomas are rare non cancerous (benign) brain tumours. They start in the cells that line the blood vessels in the brain, spinal cord and brain stem. They usually grow slowly over some years.
Most haemangioblastomas start in the back of the brain (cerebellum).
Haemangioblastomas don’t usually spread to other parts of the brain. The symptoms you have depend on where the tumour is in the brain or spinal cord. Symptoms might include:
- problems with walking, balance, speech and coordination
- a build up of brain fluid (cerebrospinal fluid) which can cause headaches and feeling sick
Von Hippel-Lindau syndrome
Some haemangioblastomas happen because of a rare inherited syndrome called von Hippel-Lindau syndrome. People with this syndrome have a higher risk of developing different types of tumours, including haemangioblastoma.
How common it is
Haemangioblastomas are rare tumours. They are a type of tumour called haemangiomas. Around 1 out of every 100 brain tumours (around 1%) diagnosed are haemangiomas. Around 12,300 people are diagnosed with a brain tumour in the UK each year. This includes tumours in other parts of the central nervous system as well.
What tests will I have?
To find out what is causing your symptoms your doctor will arrange for you to have some tests. The tests you might have include:
- MRI scan or CT scan
- blood tests
- a test of your neurological system (neurological examination)
- a scan to look at the blood vessels in the brain (brain angiogram)
- a biopsy
As well as finding out whether you have a tumour, the tests check the size of the tumour and its location. This helps your doctor plan your treatment.
Treatment
The treatment you have depends on:
- the size of your tumour and whether it is growing
- the symptoms you have
- your age
- your quality of life
Treatment might be monitoring, surgery or radiotherapy. The team caring for you will talk to you about your treatment.
Monitoring
You might not need treatment straight away if you have a very small haemangioblastoma which isn't growing. And if you don’t have symptoms. If this is the case, your doctors may recommend monitoring the tumour with regular MRI scans. This is called watchful waiting or active surveillance.
Surgery
Surgery is the main treatment for haemangioblastoma. A brain specialist surgeon (neurosurgeon) removes all the tumour or just a part. This depends on where the tumour is.
You might have side effects after the operation. The side effects include:
- bleeding in the brain
- infection in the membranes that surround the brain (meningitis)
Radiotherapy
You might have radiotherapy if:
- you can’t have surgery for any reason
- your haemangioblastoma has come back after surgery
- doctors couldn’t remove all the tumour during the operation
You might have a type of radiotherapy called stereotactic radiotherapy or radiosurgery. Both treatments target high doses of radiotherapy to the tumour.
Follow up
You have regular appointments with your doctor or nurse after treatment finishes. Your doctor examines you at each appointment. They ask how you are feeling, whether you have had any symptoms or side effects, and if you are worried about anything. You might have hearing tests. And you might also have MRI scans on some visits.
How often you have check ups depends on your individual situation.
Coping with haemangioblastoma
Coping with a diagnosis of a brain tumour can be difficult, both practically and emotionally. It can be especially difficult when you have a rare tumour. Being well informed about the type of tumour you have, and its treatment can make it easier to cope.
Research and clinical trials
Doctors are always trying to improve the diagnosis and treatment of brain tumours. As part of your treatment, your doctor might ask you to take part in a clinical trial. This might be to test a new treatment or look at different combinations of existing treatments.
