Ependymoma

Symptoms will depend on the size and position of the tumour and whether the tumour is in the spinal cord or the brain. Ependymomas are often slow growing. Symptoms may develop slowly over many months.

Symptoms may happen if a tumour presses on or grows into nearby areas of the brain or spinal cord. This can stop that part of the brain from working normally.

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 and problems with speech
• 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 usually have brain scans to find out the exact position and size of the tumour. You may have a brain CT scan first. You also usually have an MRI brain scan. You may have an MRI of both the brain and the spine.

Having an MRI scan is important as it can give more detailed information. If you are not able to have an MRI scan, your doctor will discuss this with you.

There are different types of MRI scans. You may need to have more than 1 to ensure that your doctors have all of the information they need to make a diagnosis and guide any treatment. 

We have more information on the different types of MRI scans used to diagnose brain tumours.

You may also have a biopsy, which involves an operation to take a sample of the tumour to test. Brain tumour biopsies are usually done at the same time as surgery to remove the tumour.

You may also have a lumbar puncture, to collect a small sample of cerebrospinal fluid (CSF) to test.

Your doctor may also:

• do a physical examination of parts of your nervous system, such as checking 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.

There are different types of ependymomas. Your doctor may also describe an ependymoma by the type:

Depending on initial results further molecular tests may be done on the same sample to look for other gene changes. In some cases, different results in molecular markers may change the type of treatment you are offered.

You may have to wait some time for the results of these tests. Your doctor can tell you more about molecular tests and if they might be helpful in your situation.

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

• size and position of the tumour
• type of the tumour - this includes the grade and molecular markers
• 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 risks of different treatment types. They will also explain the 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 for an ependymoma. The aim of the surgery is to remove as much of the tumour as safely possible. Some types of ependymoma that can be completely removed do not usually need any other treatment.

We have more information about what to expect before and after surgery.

You may also have radiotherapy treatment if: 

• the tumour has not been completely removed
• it is a type of ependymoma that is more likely to come back (recur).

Radiotherapy uses high-energy x-rays to destroy the tumour cells and control the tumour.

You may have radiotherapy:

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

We have more information about coping with side effects of radiotherapy.

Chemotherapy uses anti-cancer drugs to destroy tumour cells. Chemotherapy is rarely used to treat ependymoma in adults. But sometimes doctors may suggest having chemotherapy if the tumour comes back.

We have more information about coping with side effects of chemotherapy.

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 may continue and do not always 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.

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 after it has finished. 

You may have the following treatments:

• Drugs called anti-convulsants or anti-epileptic drugs (AEDs), to reduce the risk of seizures.
• Steroids to reduce swelling around the tumour
• Surgery to drain fluid from the brain to another area of the body to reduce pressure inside the skull. This might be with an operation called endoscopic third ventriculostomy (ETV). It involves putting in a thin tube called an endoscope into the brain. This helps create a new channel to bypass the blockage of the cerebrospinal fluid (CSF).

Sometimes a brain tumour cannot be removed or may stop responding to treatment. If this happens you can still have treatment for any symptoms you may have. You will have supportive care (sometimes called palliative care) from a specialist doctor or nurse who is an expert at managing symptoms and providing emotional support.

We have more information about coping with advanced cancer.

Clinical trials are a type of medical research involving people. They are important because they show which treatments are most effective and safe. This helps healthcare teams plan the best treatment for the people they care for.

Trials may test how effective a new treatment is compared to the current treatment used. Or they may get information about the safety and side effects of treatments.

They will give you information about the clinical trial so that you understand what it means to take part. If you decide not to take part in a trial, your specialist doctor and nurse will respect your decision. You do not have to give a reason for not taking part. Your decision will not change your care. Your doctor will give you the standard treatment for the type of tumour you have.

Clinical trials also research other areas. These include diagnosis and managing side effects or symptoms. As these tumours are rare, there may not always be a relevant clinical trial happening. If there is, your doctor or nurse may ask you to think about taking part.

We have more information about clinical trials.