Ependymoma

What is an ependymoma?

An ependymoma is a tumor that forms in your brain or spinal cord. Ependymoma is pronounced eh-PEN-de-MO-ma.

Ependymomas are primary tumors. That means they form directly in your brain or spinal cord (they don’t spread there from somewhere else in your body).

They’re a type of glioma. Ependymomas are the sixth most common brain tumor in children. But they can affect adults, too.

Are ependymomas aggressive?

Healthcare providers grade ependymomas on a 1 to 3 scale, based on how quickly they grow. Grade 1 tumors grow the slowest and grade 3 grow fastest.

Grade 1 and 2 ependymomas are noncancerous (benign). They usually grow slowly and don’t spread (metastasize) from where they form.

Grade 3 ependymomas are cancerous (malignant). They grow more aggressively (much faster) than lower-grade tumors.

Types of ependymomas

In addition to grades, there are several types of ependymomas, including:

• Subependymomas (grade 1). These grow near the chambers in your brain (ventricles) that contain cerebrospinal fluid (CSF). They’re more common in adults than children.
• Classic ependymomas (grade 2). Classic ependymomas are named that because they’re the most common type. They can affect both children and adults.
• Myxopapillary ependymomas (grade 2). These grow in your lower spinal cord. They’re most common in adult men.
• Anaplastic ependymomas (grade 3). These usually form near the base of your brain. They grow quickly and often spread to other parts of your brain. They’re the most likely to regrow after treatment (recur).

What are ependymoma symptoms?

An ependymoma can cause a lot of symptoms depending on where it forms. Some of the most common symptoms include:

• Back pain
• Balance issues
• Blurry vision or other vision changes
• Dizziness
• Headaches
• Mood swings
• Muscle weakness
• Nausea & vomiting
• Neck pain
• Numbness in your arms or legs
• Seizures
• Trouble controlling your pee (urinary incontinence)

Babies and very young children can’t tell you they’re feeling pain or other symptoms. You might notice:

• A larger-than-usual head
• Sleeplessness
• Unusual irritability or fussing
• Vomiting or spitting up more than usual

What causes ependymomas?

Experts aren’t sure what causes ependymomas. They may happen by mistake when ependymal cells in your brain divide and replicate. Some genetic variations may cause them.

Some studies have found that people who carry the genetic variations that cause neurofibromatosis type 2 may be more likely to develop ependymomas. But experts can’t say for sure that they’re linked. They’re still studying this possible connection.

How do healthcare providers diagnose an ependymoma?

A healthcare provider will diagnose an ependymoma with a physical exam, a neurological exam and some tests. Your provider will ask about your symptoms, and when you first noticed them.

Your provider may use some of the following tests to diagnose an ependymoma:

• Biopsy
• CT scan
• Lumbar puncture
• MRI

What are ependymoma treatments?

Your healthcare provider will treat an ependymoma with:

• Surgery. Surgery is the most common ependymoma treatment. A surgeon will remove as much of the tumor as possible.
• Radiation therapy. Radiation therapy uses powerful X-rays to destroy tumor cells. You might need radiation before and/or after surgery.
• Chemotherapy (chemo). Chemo is medication that kills cancer cells. You’ll usually only need chemo if the tumor has spread to other areas of your body. This is very rare with ependymomas.
• Immunotherapy. You’ll take medications that boost your immune system’s ability to fight cancer. Immunotherapy is a rare treatment for an ependymoma.

What is the survival rate if you have an ependymoma?

The five-year survival rate for ependymomas is nearly 85%. That means around 85% of people are still alive within five years of being diagnosed. But this number may not apply to you or your unique situation. Your providers will tell you what can expect.

There are lots of factors that can impact your survival rate, including:

• The tumor’s grade
• The tumor’s location
• Your age
• Your overall health

Is ependymoma cancer curable?

There’s no cure for cancer, but it’s possible to remove or destroy a grade 3 ependymoma with treatment.

Remember, there’s always a chance an ependymoma regrows (recurs), even after you’ve been declared cancer-free. That’s much more likely with grade 3 tumors. Your providers and surgeon will tell you what to expect based on your age and overall health.

When should I see my healthcare provider?

Your provider will tell you how often you’ll need follow-up visits to monitor any changes in your body. You’ll need regular imaging tests to keep an eye on the ependymoma during treatment.

Which questions should I ask my doctor?

You may want to ask your healthcare provider:

• What grade is the ependymoma?
• Which type of tumor is it?
• Which treatments will I need?
• What are the chances the ependymoma comes back after it’s removed?