Ependymoma

Ependymomas are often slow growing, so the symptoms may develop slowly over many months. As a tumour grows, it can press on or grow into nearby areas of the brain. This can cause symptoms because it stops that part of the brain from working normally. The symptoms will depend on where the tumour is in the spinal cord or the brain.

If the tumour is in the spinal cord, the first symptoms are usually:

• pain in the neck or back
• difficulty walking
• numbness or weakness in the arms
• problems with bladder control.

If the tumour is in the brain, the first symptoms of an ependymoma may be caused by the tumour causing increased pressure in the skull. This is called raised intracranial pressure.

Symptoms include:

• headaches
• feeling or being sick
• problems with coordination and balance
• problems with sight
• seizures (fits)
• being confused
• changes in mood and personality, but this is rare.

The tumour may also cause other symptoms, depending on which part of the brain is affected.

We have more information about possible symptoms of a brain tumour.

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 have a brain MRI scan or brain CT scan to find out the exact position and size of the tumour.

You may also have:

• a biopsy, to take a small sample of the tumour to test
• a lumbar puncture, to collect a small sample of cerebrospinal fluid (CSF) to test.

Your doctor may also:

• check your reflexes 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 and to see how well your kidneys and liver are working.

Being diagnosed with a brain tumour can make you feel shocked, frightened, angry or upset. 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 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.

You may also want to get support from a brain tumour charity, such as:

• Brain Tumour Action
• The Brain Tumour Charity
• Brainstrust.

Most people diagnosed with a brain tumour will not be allowed to drive for a time after their diagnosis. Your doctor, surgeon or specialist nurse will tell you if this applies to you. 

If you have a driving licence, you must tell the licensing agency you have been diagnosed with a brain tumour.

You could be fined if you do not tell them. You could also be prosecuted if you have an accident.

The main treatments for ependymomas are surgery and sometimes radiotherapy. Your treatment depends on:

• the size and position of the tumour
• the grade of the tumour
• the symptoms you have.

A team of specialists will plan your treatment. Your specialist doctor and 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. 

Surgery is the main treatment used to remove this type of tumour. If you have a low grade ependymoma and it is completely removed, you will not usually need any other treatment.

If the tumour has not been completely removed, you may also have radiotherapy treatment. Radiotherapy uses high-energy rays to destroy the tumour cells.

You may have radiotherapy:

• after surgery, if the tumour cannot be completely removed
• after surgery if you have a higher grade ependymoma, to reduce the risk of it coming back
• as your main treatment, if surgery is not possible.

Your specialist doctor or 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 do not get better. These are called long-term effects. You may also get side effects that may start months or years later. These are called late effects.

We have more information about coping:

• before and after surgery
• with side effects of radiotherapy
• with side effects of chemotherapy.

You may need treatment for the symptoms of an ependymoma 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:

• drugs called anti-convulsants to prevent seizures
• steroids to reduce swelling around the tumour
• surgery to place a long, thin tube called a shunt – this lets some of the fluid drain from the brain to another area of the body, to reduce pressure inside the skull.

Sometimes a brain tumour cannot be removed or controlled anymore. If this happens you can still have treatment for any symptoms. You will have supportive care (sometimes called palliative care) from a specialist doctor or nurse who is an expert at managing symptoms.

We have more information about coping with advanced cancer.

After your treatment has finished, you will have regular check-ups, tests and scans.

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.

Many people find they get very anxious before appointments. This is natural. It may help to get support from family, friends or a specialist nurse.