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Ependymoma - Childhood - Introduction

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Childhood Ependymoma. Use the menu to see other pages. Think of that menu as a roadmap for this entire guide.

Childhood ependymoma is a rare, malignant type of brain tumor that most often occurs in young children. Ependymomas originate from radial glial cells, which are a type of normal cell within the brain.

A tumor begins when healthy cells change and grow out of control, forming a mass. A tumor can be malignant (cancerous) or non-malignant (benign). A malignant or cancerous tumor can grow and spread to other parts of the body. A non-malignant or benign tumor usually grows slowly but will not spread.

Even though a childhood ependymoma can occur in any part of the brain or spine, it most commonly occurs in the cerebellum. The cerebellum is the part of the brain that coordinates the body’s movements. (To see medical drawings of the different parts of the brain, visit another page in this guide.) In young adults, a subtype called a myxopapillary ependymoma sometimes occurs in the spinal cord.

Many times, ependymomas will block the normal flow of cerebral spinal fluid, which can lead to a condition called hydrocephalus. Hydrocephalus means there is a build-up of cerebrospinal fluid, resulting in increased pressure within the brain. Because of its location, at the time of initial diagnosis, children with ependymoma often complain of headaches, nausea, vomiting, blurred vision, and difficulty walking.

This guide covers ependymoma diagnosed in children and teens, also called pediatric ependymoma. For information about brain tumors in adults, visit in a different guide on this website.

The next section in this guide is Statistics. It helps explain the number of children who are diagnosed with ependymoma and general survival rates. Use the menu to choose a different section to read in this guide.

Ependymoma - Childhood - Statistics

Approved by the Cancer.Net Editorial Board, 02/2023

ON THIS PAGE: You will find information about the estimated number of children and teens who will be diagnosed with ependymoma each year. You will also read some general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with a tumor are the same. Use the menu to see other pages.

Every person is different, with different factors influencing their risk of being diagnosed with this tumor and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for your child individually. The original sources for these statistics are provided at the bottom of this page.

How many children and teens are diagnosed with ependymoma?

Approximately 200 children and teens under the age of 19 in the United States will be diagnosed with ependymoma in 2023, accounting for about 5% of all childhood brain cancers. Ependymoma occurs most often in children under the age of 5, but it is possible at any age.

What is the survival rate for childhood ependymoma?

There are different types of statistics that can help doctors evaluate a child or teen’s chance of recovery from ependymoma. These are called survival statistics. A specific type of survival statistic is called the relative survival rate. It is often used to predict how having a tumor may affect life expectancy. Relative survival rate looks at how likely people with ependymoma are to survive for a certain amount of time after their initial diagnosis or start of treatment compared to the expected survival of similar people without this tumor.

Example: Here is an example to help explain what a relative survival rate means. Please note this is only an example and not specific to this type of cancer. Let’s assume that the 5-year relative survival rate for a specific type of cancer is 90%. “Percent” means how many out of 100. Imagine there are 1,000 people without cancer, and based on their age and other characteristics, you expect 900 of the 1,000 to be alive in 5 years. Also imagine there are another 1,000 people similar in age and other characteristics as the first 1,000, but they all have the specific type of cancer that has a 5-year survival rate of 90%. This means it is expected that 810 of the people with the specific cancer (90% of 900) will be alive in 5 years.

It is important to remember that statistics on the survival rates for children and teens with ependymoma are only an estimate. They cannot tell an individual person if the tumor will or will not shorten their life. Instead, these statistics describe trends in groups of people previously diagnosed with the same disease, including specific stages of the disease.

The 5-year relative survival rate in the United States for children under the age of 15 with ependymoma is approximately 77%.

The survival rates for ependymoma vary based on several factors. These include the stage of tumor, a person’s age and general health, and how well the treatment plan works.

Experts measure relative survival rate statistics for ependymoma every 5 years. This means the estimate may not reflect the results of advancements in how ependymoma is diagnosed or treated from the last 5 years. Talk with your child’s doctor if you have any questions about this information. Learn more about understanding statistics.

Statistics adapted from the Central Brain Tumor Registry of the United States Statistical Report: Primary Brain and Other Central Nervous System Tumors Diagnosed in the United States in 2015–2019 (published October 2022) and the websites of American Cancer Society and St. Jude Children’s Research Hospital. (All sources accessed February 2023.)

The next section in this guide is Medical Illustrations. It offers drawings of body parts often affected by ependymoma. Use the menu to choose a different section to read in this guide.

Ependymoma - Childhood - Medical Illustrations

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will find a drawing of the main body parts affected by ependymoma. Use the menu to see other pages.

This illustration shows several views of a child’s brain and central nervous system. A medial (side) view of the brain shows the cerebrum and cerebellum. The cerebrum is largest part of the brain and made up of four lobes: the frontal lobe at the front of the skull, the parietal lobe at the upper rear of the skull, above the occipital lobe, and the temporal lobe, which is located under the frontal and parietal lobes on both sides of the cerebrum. The cerebellum is located under the occipital and temporal lobes at the rear of the skull. The cross section of the brain shows the long corpus callosum located under the cerebrum in the center of the brain, the septum pellucidum, which runs down from the corpus callosum, and the diencephalon, which connects the cerebrum and the brain stem. The brain stem is the lowest part of the brain, and made up of 3 parts: the midbrain, the pons, which bulges out from the medulla oblongata, which in turn connects to the spinal cord. The fourth ventricle is a fluid filled space between the brain stem and the cerebellum, underneath the colliculi of the midbrain. An overall view of the body show that the spinal cord extends from the brain stem down the back. Peripheral nerves branch out from the spinal cord to the rest of the body. Copyright 2004 American Society of Clinical Oncology. Robert Morreale/Visual Explanations, LLC.

The next section in this guide is Risk Factors. It explains the factors that may increase the chance of developing ependymoma. Use the menu to choose a different section to read in this guide.

Ependymoma - Childhood - Risk Factors

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will find out more about the factors that increase the chance of developing ependymoma. Use the menu to see other pages.

A risk factor is anything that increases a person’s chance of developing cancer. Although risk factors often influence the development of cancer, most do not directly cause cancer. Some people with several risk factors never develop cancer, while others with no known risk factors do.

The causes of childhood ependymoma are unknown, and little is known about the risk factors or the best ways to screen for or prevent this disease. Researchers have found that children with neurofibromatosis type 2 (NF2) have an increased risk of developing ependymoma. NF2 is an inherited condition that increases the risk of developing several different types of tumors of the central nervous system, including ependymoma.

The next section in this guide is Symptoms and Signs. It explains what body changes or medical problems ependymoma can cause. Use the menu to choose a different section to read in this guide.

Ependymoma - Childhood - Symptoms and Signs

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will find out more about changes and other things that can signal a problem that may need medical care. Use the menu to see other pages.

Children and teens with ependymoma may experience the following symptoms or signs. Symptoms are changes that you can feel in your body. Signs are changes in something measured, like by taking your blood pressure or doing a lab test. Together, symptoms and signs can help describe a medical problem. Sometimes, children with ependymoma do not have any of the signs and symptoms described below. Or, the cause of a symptom or sign may be a medical condition that is not a tumor.

  • Headaches

  • Nausea and vomiting

  • Changes in vision, such as blurriness

  • Difficulty with walking or balance

  • Jerky eye movements

  • Neck pain

  • Reaching childhood developmental milestones more slowly than expected or losing previously achieved developmental milestones

  • Seizures/convulsions, which are sudden involuntary movements of a person’s muscles

If you are concerned about any changes your child experiences, please talk with your child’s doctor. Your doctor will ask how long and how often your child has been experiencing the symptom(s), in addition to other questions. This is to help figure out the cause of the problem, called a diagnosis.

If a brain tumor is diagnosed, relieving symptoms remains an important part of care and treatment. Managing symptoms may also be called "palliative care" or "supportive care". It is often started soon after diagnosis and continued throughout treatment. Be sure to talk with your child’s health care team about the symptoms your child experiences, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Use the menu to choose a different section to read in this guide.

Ependymoma - Childhood - Diagnosis

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. Use the menu to see other pages.

Doctors use many tests to find, or diagnose, a brain tumor. They also do tests to learn if a tumor has spread to other parts of the body. If the tumor has spread, it is called metastasis.

For most tumor types, a biopsy is the only sure way for the doctor to know if an area of the body has a tumor. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

How ependymoma is diagnosed

There are many tests used for diagnosing ependymoma. Not all tests described here will be used for every child. Your child’s doctor may consider these factors when choosing a diagnostic test:

  • The type of tumor suspected

  • Your child’s signs and symptoms

  • Your child’s age and general health

  • The results of earlier medical tests

In addition to a physical examination, the following tests may be used to diagnose ependymoma:

  • Computed tomography (CT or CAT) scan. A CT scan takes pictures of the inside of the body using x-rays taken from different angles. A computer combines these pictures into a detailed, 3-dimensional image that shows any abnormalities or tumors. A CT scan can be used to measure the tumor’s size. Sometimes, a special dye called contrast medium is usually injected into a patient’s vein before the scan to provide better detail on the image.

  • Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. MRI can be used to measure the tumor’s size. A contrast medium (or dye) is often injected into a patient’s vein during the scan to create a clearer picture. An MRI of the spine may be used to find out if the tumor has spread to the spine.

  • Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that a tumor is present, but only a biopsy can make a definite diagnosis. A pathologist then analyzes the sample(s). A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease. For ependymoma, surgery is needed to get a sample of tissue (see Types of Treatment).

  • Lumbar puncture (spinal tap). A lumbar puncture is a procedure in which a needle is used to take a sample of cerebral spinal fluid (CSF) to look for cancer cells, blood, or tumor markers. Tumor markers are substances found in higher than normal amounts in the blood, urine, or body tissues of people with certain kinds of cancer. CSF is the fluid that flows around the brain and the spinal cord. Doctors generally give an anesthetic to numb the lower back before the procedure. This procedure is sometimes done after ependymoma is diagnosed and the tumor is removed.

After diagnostic tests are done, your child’s doctor will review the results with you. If the diagnosis is ependymoma, these results also help the doctor describe the tumor. This is called staging and grading.

The next section in this guide is Stages and Grades. It explains the system doctors use to describe the extent of the disease. Use the menu to choose a different section to read in this guide.

Ependymoma - Childhood - Stages and Grades

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will learn about how doctors describe the growth or spread of ependymoma. This is called the stage and grade. Use the menu to see other pages.

What is cancer staging?

Staging is a way of describing where the tumor is located, if or where it has spread, and whether it is affecting other parts of the body. Doctors use diagnostic tests to find out the tumor's stage, so staging may not be complete until all of the tests are finished. Knowing the stage helps the doctor recommend the best kind of treatment, and it can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of tumors.

There is no formal staging system for ependymoma. However, it can be classified based on where in the brain the tumor is located and whether it has spread. These descriptions are:

  • Supratentorial: The tumor is above the membrane that covers the cerebellum, known as the tentorium cerebella.

  • Infratentorial: The tumor is growing below the tentorium cerebella.

  • Spinal: The tumor is growing in the central canal of the spinal cord or at the bottom of the spinal canal.

  • Recurrent: A recurrent tumor is a tumor that has come back after treatment. If the tumor does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis.

Tumor Grade

Doctors also describe ependymoma by its grade. The grade describes how much the tumor cells look like healthy cells when viewed under a microscope. The doctor compares the tumor’s tissue with healthy tissue. Healthy tissue usually contains many different types of cells grouped together. If the tumor cells look similar to healthy tissue and has different cell groupings, it is called "differentiated" or a "low-grade tumor." If the tumor’s tissue looks very different from healthy tissue, it is called "poorly differentiated" or a "high-grade tumor."

The World Health Organization (WHO) classifies ependymoma into 3 grades:

  • Grade I (1): Subependymoma

  • Grade II (2): Ependymoma or myxopapillary ependymoma

  • Grade III (3): Anaplastic ependymoma

In general, the lower the tumor’s grade, the better the prognosis. However, there are different opinions among doctors about importance of grade in determining the prognosis for children diagnosed with "classic" ependymoma (WHO grade II) and anaplastic ependymoma (WHO grade III). 

Information about the stage and grade will help the doctor recommend a specific treatment plan. The next section in this guide is Types of Treatment. Use the menu to choose a different section to read in this guide.

Ependymoma - Childhood - Types of Treatment

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will learn about the different types of treatments doctors use for children with ependymoma. Use the menu to see other pages.

In general, cancer in children is uncommon. This means it can be hard for doctors to plan treatments unless they know what has been most effective in other children. That is why more than 60% of children with cancer are treated as part of a clinical trial. A clinical trial is a research study that tests a new approach to treatment. The “standard of care” is the best treatments known based on clinical trials. Clinical trials may test such approaches as a new drug, a new combination of existing treatments, or new doses of current therapies. The health and safety of all children participating in clinical trials are closely monitored.

To take advantage of these newer treatments, children and teens with a brain tumor should be treated at a specialized cancer center. Doctors at these centers have extensive experience in treating cancer in these younger age groups and have access to the latest research. A doctor who specializes in treating children with cancer is called a pediatric oncologist. A doctor who specializes in treating children with a brain tumor is called a pediatric neuro-oncologist. If a pediatric cancer center is not nearby, general cancer centers sometimes have pediatric specialists who are able to be part of your child’s care.

How ependymoma is treated

In many cases, a team of doctors works with the patient and the family to provide care. This is called a multidisciplinary team. Pediatric cancer centers often have extra support services for patients and their families, such as child life specialists, dietitians, physical and occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.

Treatment options and recommendations depend on several factors, including the type of tumor, its grade, possible side effects, the family’s preferences, and the child’s overall health. Take time to learn about all of your child’s treatment options and be sure to ask questions about things that are unclear. Talk with your child’s doctor about the goals of each treatment and what your child can expect while receiving treatment. These types of talks are called "shared decision-making." Shared decision-making is when you and your doctors work together to choose treatments that fit the goals of your child's care. Shared decision-making is particularly important for ependymoma because there are different treatment options. Learn more about making treatment decisions.

The common types of treatments used for childhood ependymoma are described below. Your child’s care plan may also include treatment for symptoms and side effects, an important part of care for ependymoma.


Surgery is usually the first treatment for ependymoma. Surgery is the removal of the tumor and some surrounding healthy tissue during an operation. A neurosurgeon is a doctor who specializes in treating a tumor in the brain or spine with surgery. 

There are three possible goals of surgery:

  • Relieve symptoms caused by the tumor's compression of the brain

  • To obtain a tissue biopsy to confirm the diagnosis of an ependymoma (see Diagnosis)

  • Remove as much of the tumor as possible

The prognosis of children with ependymoma is significantly better when the tumor can be completely removed by surgery, called a total resection. Occasionally, more than 1 surgery may be necessary to achieve a total resection of the tumor.

Surgery to the brain requires the removal of part of the skull, a procedure called a craniotomy. After the surgeon removes the tumor, the patient’s own bone will be used to cover the opening in the skull. There have been rapid advances in surgery for brain tumors. Better imaging tests give surgeons more tools to plan and perform surgery.

Sometimes, surgery cannot be performed because the tumor is located in a place that the surgeon cannot reach or is near a vital structure. These tumors are called inoperable or unresectable. If the tumor is inoperable, the doctor will recommend other treatment options.

After surgery, the doctor will create a treatment plan based on the following criteria:

  • The amount of tumor removed (if a complete resection was achieved)

  • Your child’s age

  • Whether the tumor has spread to another place

Side effects from surgery for ependymoma can vary. Before surgery, talk with your child’s health care team about the possible side effects from the specific surgery your child will have and how they can be managed. Learn more about the basics of surgery.

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Radiation therapy

Radiation therapy is the use of high-energy x-rays or particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist.

Radiation therapy is commonly used after surgery to treat ependymoma. If the cancer has not spread, radiation therapy is directed at the tumor. If the cancer has spread, radiation therapy may be directed at the whole brain and the spine. It may also be used to treat a tumor that cannot be removed with surgery. In the past, there was concern about using radiation therapy for children younger than 3 years old, but more recent clinical trials show that focal radiation therapy is safe and effective for children with ependymoma as young as 1 year old.

The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. Radiation therapy may consist of particles called X-rays (also called photons) or protons. A radiation therapy regimen, or schedule, for ependymoma usually consists of approximately 30 to 33 treatments given over a period of 6 to 7 weeks.

Short-term side effects from radiation therapy may include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Generally speaking, these side effects go away soon after treatment is finished. Learn more about the basics of radiation therapy.

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Chemotherapy is the use of drugs to destroy cancer cells, usually by keeping the cancer cells from growing, dividing, and making more cells. Chemotherapy is given by a pediatric oncologist or medical oncologist, a doctor who specializes in treating cancer with medication.

Chemotherapy alone is often not effective to treat ependymoma, but it may be beneficial if it is used in combination with surgery and/or radiation therapy (see above). Chemotherapy has also helped shrink a tumor so that surgeons are able perform a second surgery to remove a tumor that could not be removed during a first surgery (see Latest Research). Clinical trials of chemotherapy after surgery and radiation therapy are currently underway.

There are different ways to give chemotherapy. Systemic chemotherapy gets into the bloodstream to reach tumor cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally). A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or a combination of different drugs given at the same time.

The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away after treatment is finished.

Learn more about the basics of chemotherapy. The medications used to treat cancer are continually being evaluated. Talking with your child’s doctor is often the best way to learn about the medications prescribed for your child, their purpose, and their potential side effects or interactions with other medications. Learn more about your child’s prescriptions by using searchable drug databases.

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Physical, emotional, and social effects of cancer

Cancer and its treatment cause physical symptoms and side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative care or supportive care. It is an important part of your child's care that is included along with treatments intended to slow, stop, or eliminate the cancer. 

Palliative care focuses on improving how your child feels during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or type and stage of cancer, may receive this type of care. And it often works best when it is started right after a cancer diagnosis. People who receive palliative care along with treatment for the cancer often have less severe symptoms, better quality of life, and report that they are more satisfied with treatment. 

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional and spiritual support, and other therapies. Your child may also receive palliative treatments similar to those meant to get rid of the cancer, such as chemotherapy, surgery, or radiation therapy. 

Before treatment begins, talk with your child's doctor about the goals of each treatment in the recommended treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.

During treatment, your child's health care team may ask you to answer questions about your child's symptoms and side effects to describe each problem. Be sure to tell the health care team if your child is experiencing a problem. This helps the health care team treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future. 

Learn more about the importance of tracking side effects in another part of this guide. Learn more about palliative care in a separate section of this website. 

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Remission and the chance of recurrence

A remission is when cancer cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED.

A remission may be temporary or permanent. This uncertainty causes many people to worry that the brain tumor will come back. While many remissions are permanent, it is important to talk with the doctor about the possibility of the cancer returning. Understanding your child’s risk of recurrence and the treatment options may help people feel more prepared if the tumor does return. Learn more about coping with the fear of recurrence.

If the cancer returns after the original treatment, it is called recurrent cancer. It may come back in the same place, called a local recurrence, nearby, called a regional recurrence, or in another place, called a distant recurrence.

If a recurrence happens, a new cycle of testing will begin again to learn as much as possible about it. After this testing is done, you and your child’s doctor will talk about the treatment options. Often the treatment plan will include the treatments described above such as surgery, radiation therapy, and chemotherapy, but they may be used in a different combination or given at a different pace. Your child’s doctor may suggest clinical trials that are studying new ways to treat recurrent ependymoma. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

If your child is diagnosed with a recurrence, you and your family may experience emotions such as disbelief or fear. You are encouraged to talk with your child's health care team about these feelings and ask about support services to help your family cope. Learn more about dealing with a recurrence.

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If treatment does not work

Although treatment is successful for many children with ependymoma, sometimes it is not. If a child’s tumor cannot be cured or controlled, this is called advanced or terminal cancer. This diagnosis is stressful, and advanced ependymoma may be difficult to discuss. However, it is important to have open and honest conversations with your child’s health care team to express your family’s feelings, preferences, and concerns. The health care team has special skills, experience, and knowledge to support patients and their families and is there to help.

Hospice care is designed to provide the best possible quality of life for people who are expected to live less than 6 months. You and your family are encouraged to talk with the health care team about hospice care options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option for many families. Some children may be happier and more comfortable if they can attend school part-time or keep up other activities and social connections. The child’s health care team can help parents or guardians decide on an appropriate level of activity. Making sure a child is physically comfortable and free from pain is extremely important as part of end-of-life care. Learn more about caring for a terminally ill child and advanced care planning.

The death of a child is an enormous tragedy, and families may need support to help them cope with the loss. Pediatric cancer centers often have professional staff and support groups to help with the process of grieving. Learn more on grieving the loss of a child.

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The next section in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for people with cancer. Use the menu to choose a different section to read in this guide.

Ependymoma - Childhood - About Clinical Trials

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are studied to see how well they work. Use the menu to see other pages.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for children with ependymoma. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. Every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.

Clinical trials are used for all types and stages of childhood ependymoma. Many focus on new treatments to learn if a new treatment is safe, effective, and possibly better than existing treatments. These types of studies evaluate new drugs, different combinations of treatments, new approaches to radiation therapy or surgery, and new methods of treatment.

Children who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and the chance that the new treatment may not work. People are encouraged to talk with their health care team about the pros and cons of joining a specific study.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your doctor about clinical trials for symptoms and side effects.

Deciding to join a clinical trial

People decide to participate in clinical trials for many reasons. For some, a clinical trial is the best treatment option available. Because standard treatments are not perfect, people are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Others volunteer for clinical trials because they know that these studies are a way to contribute to the progress in treating ependymoma. Even if they do not benefit directly from the clinical trial, their participation may benefit future people with ependymoma.

Insurance coverage of clinical trial costs differs by location and by study. In some programs, some of the expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your insurance company first to learn if and how treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials.

Sometimes people have concerns that, in a clinical trial, their child may receive no treatment by being given a placebo or a “sugar pill.” You and your child will always be told when a placebo is used in a study. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, parents and children must participate in a process known as informed consent. Informed consent means that parents give permission for their child to participate in a clinical trial and that teenagers give their consent to participate. During informed consent, the doctor should:

  • Describe all of the treatment options so that the person understands how the new treatment differs from the standard treatment.

  • List all of the risks of the new treatment, which may or may not be different than the risks of standard treatment.

  • Explain what will be required of each person in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

  • Describe the purposes of the clinical trial and what researchers are trying to learn.

Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep patients safe. You and the research team will carefully review these criteria together. Your child will need to meet all of the eligibility criteria in order to participate in a clinical trial. Learn more about eligibility criteria in clinical trials.

People who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that people participating in a clinical trial talk with the doctor and researchers about who will be providing treatment and care during the clinical trial, after the clinical trial ends, and/or if they choose to leave the clinical trial before it ends.

Finding a clinical trial

Research through clinical trials is ongoing for all cancer types. For specific topics being studied for ependymoma, learn more in the Latest Research section.

Cancer.Net offers more information about clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer.

The next section in this guide is Latest Research. It explains areas of scientific research for ependymoma. Use the menu to choose a different section to read in this guide.

Ependymoma - Childhood - Latest Research

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will read about the scientific research being done to learn more about ependymoma and how to treat it. Use the menu to see other pages.

Doctors are working to learn more about ependymoma, ways to prevent it, how to best treat it, and how to provide the best care to children and teens diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Always talk with your child’s doctor about the best diagnostic and treatment options for your child.

  • Adding chemotherapy after surgery and radiation therapy. A recent study from the Children's Oncology Group demonstrated a trend towards improved survival among patients who were treated with chemotherapy. However, this difference did not meet statistical significance, and chemotherapy was associated with additional side effects. Talk with your treating physician if you have questions about the risks and benefits of the addition of chemotherapy after surgery and radiation therapy.

  • Strategies to enhance radiation therapy. Research is ongoing on several ways to plan and give radiation therapy. These include:

    • The use of radiation therapy has often been avoided in infants and young children. However, there is increasing research that shows that radiation therapy works well and has relatively few side effects for children as young as 1 year old.

    • New techniques for planning and giving radiation therapy are also being studied that better target the tumor, causing less damage to healthy parts of the brain.

    • Proton beam therapy is a type of external-beam radiation therapy that uses protons rather than x-rays to destroy cancer cells.

  • Tumor genetics. New research has shown that there are several different subgroups of ependymoma that differ based on the patterns of changes to the genes within each tumor. Studies are being done to find out if these genetic differences are associated with prognosis and if they can help identify new targeted ways to treat ependymoma. Learn more about the basics of targeted therapy

  • New combinations of chemotherapy and other treatments. New types of chemotherapy and combinations of other drugs are being researched with the goal of shrinking any tumor that remains after surgery. This use of chemotherapy is allowing doctors to perform additional surgery for children with ependymoma that was not completely removed during the original surgery. In addition, the use of chemotherapy after radiation therapy is being studied to find out if the combination can better manage tumor growth over the long term.

  • Immunotherapy. Immunotherapy is a treatment approach that uses the body's immune system to attack a tumor. Examples of immunotherapy include drugs that activate the immune system, modifying immune system cells to target cancer cells, and tumor vaccines. There are currently clinical trials being done to determine if immunotherapy could be a possible treatment for children with ependymoma. Learn more about the basics of immunotherapy

  • Predicting recurrences. The molecular features of a specific tumor are being studied to find out if they can help doctors predict the likelihood that the cancer will come back after treatment.

  • Palliative and supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current ependymoma treatments to improve patients’ comfort and quality of life.

Looking for More About the Latest Research?

If you would like more information about the latest areas of research in childhood cancer, explore these related items that take you outside of this guide:

  • To find clinical trials specific to your child’s diagnosis, talk with your child’s doctor or search online clinical trial databases.

  • Visit the Cancer.Net Blog to review information, news, and research on childhood cancer announced at recent scientific meetings or in ASCO's peer-reviewed journals.

  • Visit the website of Conquer Cancer, the ASCO Foundation to find out how to help support cancer research. Please note that this link takes you to a different ASCO website.

The next section in this guide is Coping with Treatment. It offers some guidance on how to cope with the physical, emotional, social, and financial changes that ependymoma and its treatment can bring. Use the menu to choose a different section to read in this guide.

Ependymoma - Childhood - Coping with Treatment

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of a childhood brain tumor and its treatment. Use the menu to see other pages.

Every treatment for ependymoma can cause side effects or changes to your child’s body and how they feel. For many reasons, people do not experience the same side effects even when given the same treatment for the same type of tumor. This can make it hard to predict how your child will feel during treatment.

As your family prepares to start treatment, it is normal to fear treatment-related side effects. It may help to know that your child's health care team will work to prevent and relieve side effects. This part of treatment is called palliative care or supportive care. It is an important part of your child’s treatment plan, regardless of their age or the stage of disease.

Coping with physical side effects

Common physical side effects from each treatment option for ependymoma are listed in the Types of Treatment section. Learn more about side effects of a brain tumor and its treatment, along with ways to prevent or control them. Changes to your child’s physical health depend on several factors, including the tumor’s stage, the length and dose of treatment, and your child’s general health.

It is important to discuss any new side effects or changes in existing side effects with your child's health care team. Providing this information helps them find ways to treat or manage the side effects so your child feels more comfortable and can potentially keep any side effects from worsening. 

You may find it helpful to keep track of your child's side effects so you are prepared to discuss any changes with the health care team. Learn more about why tracking side effects is helpful

Sometimes, side effects can last after treatment ends. Doctors call these long-term side effects. Side effects that occur months or years after treatment late effects. Treating long-term side effects and late effects is an important part of care for childhood cancer survivors. Learn more by reading the Follow-up Care section of this guide or talking with your child’s doctor.

Coping with emotional and social effects

Your family can have emotional and social effects after a diagnosis of ependymoma. This may include dealing with a variety of emotions, such as anxiety, sadness, or anger, or managing stress. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to an oncology social worker, counselor, or member of the clergy can help them develop more effective ways of coping and talking about cancer. 

Patients and their families are encouraged to share their feelings with a member of their health care team. You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your family’s needs.

Coping with the costs of cancer care

Treatment for a brain tumor can be expensive. It can be a source of stress and anxiety for families dealing with the diagnosis. In addition to treatment costs, many people find they have extra, unplanned expenses related to their child’s care. Families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations in a separate part of this website.

Coping with barriers to care

Some groups of people experience different rates of new cancer cases and experience different outcomes from their cancer diagnosis. These differences are called “cancer disparities.” Disparities are caused in part by real-world barriers to quality medical care and social determinants of health, such as where a person lives and whether they have access to food and health care. Cancer disparities more often negatively affect racial and ethnic minoritiespeople with fewer financial resourcessexual and gender minorities (LGBTQ+)adolescent and young adult populationsolder adults, and people who live in rural areas or other underserved communities

If your child is having difficulty getting the care they need, talk with a member of the health care team or explore other resources that help support medically underserved people

Talking with your child's health care team about side effects

Before starting treatment, talk with your child’s doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they likely to happen?

  • What can we do to prevent or relieve them?

  • When and who should we call about side effects?

Be sure to tell your child's health care team about any side effects that happen during treatment and afterward, too. Tell them even if you do not think the side effects are serious. This discussion should include physical, emotional, social, and financial effects of the brain tumor.

Caring for a child with ependymoma

Family members and friends often play an important role in taking care of a person with ependymoma. This is called being a caregiver. As a parent or guardian, you are the primary caregiver for your child. However, friends and family members can give your family valuable support, even if they live far away. Being a caregiver can also be stressful and emotionally challenging. One of the most important tasks for caregivers is caring for themselves.

When your child has ependymoma, you may have an additional range of responsibilities. These may include giving medications or managing symptoms and side effects. However, it is important to seek help from others. Below are some of the responsibilities your family or friends could help with:

  • Providing short-term care for your child

  • Giving support and encouragement

  • Assisting with meals or household chores

  • Helping with insurance and billing issues

A caregiving plan can help caregivers stay organized and help identify opportunities to delegate tasks to others. Ask how much care your child may need at home and with daily tasks during and after treatment. Use this 1-page fact sheet that includes an action plan to help make caregiving a team effort. This free fact sheet is available as a PDF, so it is easy to print.

Learn more about caregiving or read the ASCO Answers Guide to Caring for a Loved One with Cancer in English or Spanish.

Looking for More on How to Track Side Effects?

Cancer.Net Mobile app symptom tracker

Cancer.Net offers several resources to help you keep track of symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:

  • Cancer.Net Mobile: The free Cancer.Net mobile app allows you to securely record the time and severity of your child's symptoms and side effects.

  • ASCO Answers Managing Pain: Get this 32-page booklet about the importance of pain relief that includes a pain tracking sheet to record how pain affects your child. The free booklet is available as a PDF, so it is easy to print.

  • ASCO Answers Fact Sheets: Read 1-page fact sheets on anxiety and depression, constipationdiarrhea and rash that provide a tracking sheet to record the timing and severity of the side effect. These free fact sheets are available as a PDF, so they are easy to print, fill out, and give to your health care team.

The next section in this guide is Follow-up Care. It explains the importance of checkups after your child finishes cancer treatment. Use the menu to choose a different section to read in this guide.

Ependymoma - Childhood - Follow-Up Care

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will read about your child’s medical care after cancer treatment is completed and why this follow-up care is important. Use the menu to see other pages.

Care for children diagnosed with ependymoma does not end when active treatment has finished. Your child’s health care team will continue to check  that the tumor has not come back, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children treated for a brain tumor, including ependymoma, should have life-long, follow-up care.

Your child’s follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your child’s recovery in the months and years ahead. Follow-up care recommendations are specific to each person.

The following factors can affect your child’s recovery from ependymoma:

  • Tumor location

  • How much of the tumor could be removed during surgery

  • The need for and type of treatment after surgery

  • Your child’s age during treatment.

Cancer rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, family or individual counseling, nutritional planning, and/or educational assistance. The goal of rehabilitation is to help survivors and their families regain control over many aspects of their lives and remain as independent as possible. Learn more about cancer rehabilitation

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence, which means that the cancer has come back. Cancer recurs because small areas of tumor cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms.

During follow-up care, a doctor familiar with your child’s medical history can give you personalized information about the risk of recurrence. Your child’s doctor will ask specific questions about your child’s health. Some children may have blood tests or imaging tests as part of regular follow-up care. However, testing recommendations depend on several factors, including the type of tumor first diagnosed and the types of treatment given.

MRI scans are often recommended to watch for signs that the tumor is growing or has come back. If a tumor does come back, it is most likely to do so within the first several years after the first diagnosis. That’s why scans are performed more often during the first 2 to 3 years after treatment, and less often thereafter. However, ependymoma can recur many years after initial treatment, and long-term follow-up care after the completion of cancer treatment is extremely important.

The anticipation before having a follow-up test or waiting for test results may add stress to you or a family member. This is sometimes called “scanxiety.” Learn more about how to cope with this type of stress.

Managing long-term and late side effects of ependymoma

Sometimes, side effects may linger beyond the active treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years after treatment has ended.

Late effects after ependymoma treatment can occur almost anywhere in the body. They include physical problems, such as neurological problems (balance problems, weakness, and paralysis), learning problems, and secondary cancers (a second, new cancer that is a result of cancer treatment). They also include emotional problems, such as anxiety and depression, and problems with memory, thinking, and attention, and learning. Learn more about late effects of childhood cancer.

Based on the type of treatment your child received, the doctor will recommend what examinations and tests are needed to check for late effects. Follow-up care should address your child’s quality of life, including any developmental or emotional concerns. Some children may need a combination of rehabilitative services, including physical therapy and occupational therapy for nervous system side effects from the tumor or its treatment, speech therapy, hearing assistance, and cognitive therapy. Learn more about rehabilitation. After surgery, some children may need a tracheostomy or a gastrostomy. A tracheostomy is a surgical opening in the windpipe to help with breathing. A gastrostomy is a surgical opening into the stomach where a feeding tube is inserted. Others may develop hormonal problems or other new problems if the tumor recurs.

The Children's Oncology Group (COG) has studied the physical and psychological effects that survivors face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult survivors that can be found on a separate website:

Keeping a child’s personal health record

You are encouraged to organize and keep a personal record of your child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, they have a clear, written history of the diagnosis, the treatments, and the doctor’s recommendations about the schedule for follow-up care. ASCO offers forms to help track of the treatment your child received and develop a survivorship care plan when treatment is completed.

Some children continue to see their oncologist, while others transition back to the care of their pediatrician, primary care doctor, or another health care professional at some point. This decision and its timing depend on several factors, including the type of tumor, side effects, health insurance rules, and your family’s personal preferences. Talk with the health care team about your child’s ongoing medical care and any concerns you have about their future health.

If a doctor who was not directly involved in your child’s care will lead the follow-up care, be sure to share the treatment summary and survivorship care plan forms with them and with all future health care providers. Details about the specific treatment given are very valuable to the health care professionals who will care for your child throughout their lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a diagnosis of ependymoma. Use the menu to choose a different section to read in this guide.

Ependymoma - Childhood - Survivorship

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will read about how to cope with challenges in everyday life after your child’s diagnosis. Use the menu to see other pages.

What is survivorship?

The word “survivorship” means different things to different people, but it often describes living with, through, and beyond cancer. In some ways, survivorship is one of the most complicated parts of the experience because it is different for every child and their family.

After active treatment for ependymoma ends, children and their families may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after the diagnosis. Other families stay very anxious about their child’s health and become uncertain about coping with everyday life.

One source of stress may occur when frequent visits to the health care team end after completing treatment. Often, relationships built with the health care team provide a sense of security during treatment, and children and their families miss this source of support. This may be especially true when new worries and challenges surface over time, such as any late effects of treatment, learning or school problems, emotional challenges, sexual development and fertility concerns, and/or financial issues.

Every family faces different concerns and challenges. With any challenge, a good first step is being able to recognize each fear and talk about it. Effective coping requires:

  • Understanding the challenge your family is facing,

  • Thinking through solutions,

  • Asking for and allowing the support of others, and

  • Feeling comfortable with the course of action your family chooses.

It may be helpful to join an in-person support group or online community of childhood cancer survivors. Support groups also exist for parents of children diagnosed with cancer. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of the health care team, individual counseling, or asking for assistance at the learning resource center of the place where your child received treatment.

Healthy living after ependymoma

Survivorship often serves as a strong motivator to make lifestyle changes, often for the whole family.

Children who have had ependymoma can enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, limiting alcohol, maintaining a healthy weight, eating well, managing stress, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about making healthy lifestyle choices.

It is important that your child has recommended medical checkups and tests (see Follow-up Care) to take care of their health.

Talk with the doctor to develop a survivorship care plan that is best for your child’s needs.

Changing role of caregivers

Parents, other family members, and friends may also go through periods of transition. A caregiver plays a very important role in supporting a child diagnosed with ependymoma, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to a child’s diagnosis will become much less or come to an end as your child gets older. Family counselors at pediatric cancer centers can help with this transition. You can also learn more about adjusting to life after caregiving.

Looking for More Survivorship Resources?

For more information about survivorship, explore these related items. Please note these links will take you to other sections of Cancer.Net:

  • Survivorship Resources: Cancer.Net offers information and resources to help survivors cope, including specific sections for children and teens and young adults. There is also a main section on survivorship for people of all ages.

  • ASCO Answers Guide to Cancer Survivorship: Get this 48-page booklet that helps with the transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print.

The next section offers Questions to Ask the Health Care Team to help start conversations with your child’s cancer care team. Use the menu to choose a different section to read in this guide.

Ependymoma - Childhood - Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will find some questions to ask your child’s doctor or other members of the health care team, to help you better understand your child’s diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Cancer.Net Mobile app question tracker

Talking often with the health care team is important to make informed decisions about your child’s cancer care. These suggested questions are a starting point to help you learn more about your child’s care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your child’s next appointment, or download Cancer.Net’s free mobile app for a digital list and other interactive tools to manage your child’s care. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.

Questions to ask after getting a diagnosis

  • What type of brain tumor does my child have?

  • Where exactly is the tumor located?

  • Has the tumor spread? If not, is it likely to spread?

Questions to ask about choosing a cancer treatment plan and managing side effects

  • What is your familiarity with my child's tumor type and its treatment?

  • What treatment options are available?

  • What clinical trials are available for my child? Where are they located, and how do I find out more about them?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the tumor, help my child feel better, or both?

  • What is the chance for success with each treatment option?

  • Who will be part of my child’s health care team, and what does each member do?

  • Who will be leading my child’s overall treatment?

  • What are the possible side effects of this treatment, both in the short term and the long term?

  • How will this treatment affect my child’s daily life? Will they be able to go to school and perform their usual activities?

  • Could this treatment affect my child’s ability to become pregnant or have children in the future? If so, should I talk with a fertility specialist before treatment begins?

  • If I’m worried about managing the costs of medical care, who can help me?

  • What follow-up tests will my child need, and how often will he or she need them?

  • What support services are available to my child? To my family?

  • Whom should I call with questions or problems?

Questions to ask about having surgery

  • What type of surgery will my child have?

  • How long will the operation take?

  • How long will my child be in the hospital?

  • Can you describe what recovery from surgery will be like?

  • Who should I contact about any side effects my child experiences? And how soon?

  • What are the possible long-term or late effects of having this surgery?

  • What can be done to prevent or relieve the side effects?

  • Will my child need additional treatment after surgery? 

Questions to ask about having radiation therapy and chemotherapy

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • Will this treatment be given in a hospital or clinic? Or will it be given at home?

  • What side effects can I expect during treatment?

  • Who should I contact about any side effects my child experiences? And how soon?

  • What are the possible long-term or late effects of having this treatment?

  • What can be done to prevent or relieve the side effects?

Questions to ask about planning follow-up care

  • What is the chance that the tumor will come back? Should I watch for specific signs or symptoms?

  • What long-term side effects or late effects are possible based on the treatment my child received?

  • What follow-up tests will my child need, and how often will those tests be needed?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records?

  • Who will be leading my child’s follow-up care?

  • What survivorship support services are available to my child? To my family?

The next section in this guide is Additional Resources. It offers more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.

Ependymoma - Childhood - Additional Resources

Approved by the Cancer.Net Editorial Board, 11/2022

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Childhood Ependymoma. Use the menu to go back and see other pages.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Here are a few links to help you explore other parts of Cancer.Net:

This is the end of Cancer.Net’s Guide to Childhood Ependymoma. Use the menu to choose a different section to read in this guide.