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Ependymoma - Childhood - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2014

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. To see other pages, use the menu on the side of your screen. Think of that menu as a roadmap to this full guide.

Childhood ependymoma is a type of brain tumor. A tumor begins when normal cells change and grow uncontrollably, forming a mass. A tumor can be cancerous or benign. A cancerous tumor is malignant, meaning it can spread to other parts of the body. A benign tumor means the tumor will not spread. Ependymoma is a rare, cancerous brain tumor.

A brain tumor is named after the cells from which it develops. Ependymoma starts in the ependymal cells that line the ventricles, or fluid-filled spaces, in the brain and the central canal of the spinal cord. The brain and spinal column make up the central nervous system (CNS), where all vital functions are controlled, including thought, speech, and body strength.

Ependymoma belongs to a group of brain tumors called gliomas. A glioma is a tumor that grows from a glial cell, which is a supportive cell in the brain. Even though ependymoma can occur in any part of the brain or spine, it most commonly occurs in the cerebrum, which is the largest part of the brain. The cerebrum is the top part of the brain and controls motor skills, or muscle coordination, and talking.

This section covers ependymoma diagnosed in children. Learn more about brain tumors in adults.

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Ependymoma - Childhood - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2014

ON THIS PAGE: You will find information about how many children learn they have ependymoma each year and some general survival information. Remember, survival rates depend on several factors. To see other pages, use the menu on the side of your screen.

Ependymoma occurs most often in young children, accounting for about 5% of all childhood brain cancers.

The five-year survival rate is the percentage of people who survive at least five years after the cancer is detected, excluding those who die from other diseases. For children from birth to age 19, the five-year survival rate of ependymoma is approximately 75%.

Cancer survival statistics should be interpreted with caution. These estimates are based on data from many children with this type of cancer, but the actual risk for a particular individual may differ. It is not possible to tell a person how long he or she will live with ependymoma. Because the survival statistics are measured in five-year intervals, they may not represent advances made in the treatment or diagnosis of this cancer. Learn more about understanding statistics.

Source: American Cancer Society.

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Ependymoma - Childhood - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2014

ON THIS PAGE: You will find out more about the factors that increase the chance of developing ependymoma. To see other pages, use the menu on the side of your screen.

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. There is little known about the risk factors or ways to prevent the disease.

Rarely, children with neurofibromatosis type 2 (NF2) have an increased risk of developing ependymoma. NF2 is a hereditary syndrome that causes tumors of the central nervous system that are usually noncancerous.

To continue reading this guide, use the menu on the side of your screen to select another section. 

Ependymoma - Childhood - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2014

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu on the side of your screen.

Children with ependymoma may experience the following symptoms or signs. Sometimes, children with ependymoma do not show any of these symptoms. Or, these symptoms may be cause by a medical condition that is not a tumor.

  • Headaches
  • Seizures/convulsions, which are sudden involuntary movements of a person’s muscles
  • Nausea and vomiting
  • Changes in vision, such as blurriness
  • Difficulty with walking or balance
  • Swelling of the nerve at the back of the eye
  • Jerky eye movements
  • Neck pain

If you are concerned about one or more of the symptoms or signs on this list, 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 find out the cause of the problem, called a diagnosis.

If a tumor is diagnosed, relieving symptoms remains an important part of care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your child’s health care team about symptoms your child experiences, including any new symptoms or a change in symptoms.

The next section helps explain what tests and scans may be needed to learn more about the cause of the symptoms. Use the menu on the side of your screen to select Diagnosis, or you can select another section, to continue reading this guide. 

Ependymoma - Childhood - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2014

ON THIS PAGE: You will find a list of the common tests, procedures, and scans that doctors can use to find out what’s wrong and identify the cause of the problem. To see other pages, use the menu on the side of your screen.

Doctors use many tests to diagnose a tumor, determine if it is cancer, and if so, find out if it has spread to another part of the body, called metastasis. Some tests may also determine which treatments may be the most effective. For most tumors, a biopsy is the only way to make a definitive diagnosis of cancer. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis. Imaging tests may be used to find out whether the tumor has spread. This list describes options for diagnosing ependymoma, and not all tests listed will be used for every child. Your child’s doctor may consider these factors when choosing a diagnostic test:

  • Age and medical condition
  • Type of tumor suspected
  • Signs and symptoms
  • Previous test results

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

Computed tomography (CT or CAT) scan. A CT scan creates a three-dimensional picture of the inside of the body with an x-ray machine. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities or tumors. A CT scan can also be used to measure the tumor’s size. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a patient’s vein or given as a pill to swallow.

Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. MRI can also be used to measure the tumor’s size. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye can be injected into a patient’s vein or given as a pill to swallow. A spinal MRI 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. The sample removed during the biopsy is analyzed by a pathologist. 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 Treatment Options).

Lumbar puncture (spinal tap). A lumbar puncture is a procedure in which a doctor uses a needle to take a sample of cerebral spinal fluid (CSF) to look for tumor cells. 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 generally done after ependymoma is diagnosed and the tumor is removed.

After diagnostic tests are done, your child’s doctor will review all of 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 helps explain the different stages and grades for ependymoma. Use the menu on the side of your screen to select Stages and Grades, or you can select another section, to continue reading this guide. 

Ependymoma - Childhood - Stages and Grades

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2014

ON THIS PAGE: You will learn about how doctors describe the growth or spread of ependymoma. This is called the stage and grade. To see other pages, use the menu on the side of your screen.

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 to decide what kind of treatment is best and 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.

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 there is a recurrence, the tumor may need to be staged again, called re-staging, using the system above.

Grade

Doctors also describe ependymoma by its grade (G), which 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 contains 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 tumor’s grade can help the doctor predict how quickly it will spread. In general, the lower the tumor’s grade, the better the prognosis.

Information about the tumor will help the doctor recommend a treatment plan. The next section helps explain the treatment options for ependymoma. Use the menu on the side of your screen to select Treatment Options, or you can select another section, to continue reading this guide.

Ependymoma - Childhood - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2014

ON THIS PAGE: You will learn about the different ways doctors use to treat children with ependymoma. To see other pages, use the menu on the side of your screen.

In general, cancer in children is uncommon, so it can be hard for doctors to plan treatments unless they know what has been most effective in other children. That’s why more than 60% of children with cancer are treated as part of a clinical trial. Clinical trials are research studies that compare standard treatments (the best proven treatments available) to newer approaches to treatments that may be more effective. Clinical trials may test such approaches as a new drug, a new combination of standard treatments, or new doses of current therapies. Studying new treatments involves careful monitoring using scientific methods, and all participants are followed closely to track their health and progress.

To take advantage of these newer treatments, all children with cancer should be treated at a specialized cancer center. Doctors at these centers have extensive experience in treating children with cancer and have access to the latest research. A doctor who specializes in treating children with cancer is called a pediatric oncologist. In many cases, a team of doctors works with a child and the family to provide care; this is called a multidisciplinary team. Pediatric cancer centers often have extra support services for children and their families, such as child life specialists, nutritionists, physical and occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.

Treatment overview

Descriptions of the most common treatment options for childhood ependymoma are below. Treatment options and recommendations depend on several factors, including the type and stage of cancer, possible side effects, the family’s preferences, and the child’s overall health. Your child’s care plan may also include treatment for symptoms and side effects, an important part of care for ependymoma. Take time to learn about all of your child’s treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your child’s doctor and what your child can expect while receiving the treatment. Learn more about making treatment decisions.

Surgery

Surgery is the removal of the tumor and surrounding tissue during an operation. A neurosurgeon is a doctor who specializes in treating a tumor in the brain or spine with surgery. Surgery is usually the first treatment for ependymoma. It is also used to diagnose ependymoma, using a surgical biopsy (see Diagnosis). The goal of surgery is to remove as much of the tumor as possible.

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, including the use of cortical mapping, which allows doctors to identify certain areas of the brain that control the senses, language, and motor skills, and better imaging tests to give surgeons more tools to plan and perform the 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. 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
  • Your child’s age
  • Whether disease has spread

Side effects from surgery for ependymoma can vary, and you are encouraged to talk with the doctor about possible short-term and long-term side effects in detail. Learn more about surgery.

Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. The most common type of radiation treatment is called external-beam radiation therapy, which is radiation given from a machine outside the body. When radiation treatment is given using implants, it is called internal radiation therapy or brachytherapy. A radiation therapy regimen (schedule) usually consists of a specific number of treatments given over a set period of time.

Radiation therapy may be used after surgery to treat ependymoma. If the tumor has not spread, radiation therapy is directed at the tumor. If the tumor has spread, radiation therapy may treat the whole brain and the spine. It may also be used to treat a tumor that cannot be treated with surgery. While radiation therapy is not the standard treatment for children younger than three years old, there are clinical trials evaluating its usefulness for children with ependymoma in this age range.

Side effects from radiation therapy may include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. Learn more about radiation therapy.

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by stopping the cancer cells’ ability to grow and divide. Chemotherapy is given by a medical oncologist, a doctor who specializes in treating cancer with medication.

Systemic chemotherapy is delivered through 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 (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive one drug at a time or combinations of different drugs at the same time.

Chemotherapy alone is often not effective to treat ependymoma, but it may be beneficial if used in combination with other treatments. Clinical trials combining radiation therapy and chemotherapy after surgery are underway. The use of chemotherapy has also helped surgeons perform additional surgery to destroy any part of a tumor that could not be removed during the original surgery (see Latest Research).

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 once treatment is finished.

Learn more about chemotherapy and preparing for treatment. 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.

Getting care for symptoms and side effects

Cancer and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the tumor, an important part of care is relieving a child’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting your child with his or her physical, emotional, and social needs.

Palliative care can help a child at any stage of illness. Children often receive treatment for the tumor and treatment to ease side effects at the same time. In fact, people who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, and other therapies. Your child may also receive palliative treatments similar to those meant to eliminate the tumor, such as surgery, radiation therapy, and chemotherapy. Talk with your child’s doctor about the goals of each treatment in the treatment plan.

Before treatment begins, talk with your child’s health care team about the possible side effects of the specific treatment plan and supportive care options. And during and after treatment, be sure to tell your child’s doctor or another health care team member if your child is experiencing a problem so it is addressed as quickly as possible. Learn more about palliative care

Remission and the chance of recurrence

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

A remission can be temporary or permanent. This uncertainty leads to many survivors and their families feeling worried or anxious that the tumor will come back. While many remissions are permanent, it’s important to talk with the doctor about the possibility of the tumor returning. Understanding the 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 tumor does return after the original treatment, it is called a recurrent tumor. 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.

When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence, including whether the tumor’s stage and grade have changed. After testing is done, you and your child’s doctor will talk about the treatment options. Often the treatment plan will include the therapies 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 also suggest clinical trials that are studying new ways to treat this type of recurrent tumor.

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.

If treatment fails

Although treatment is successful for the majority of children with cancer, 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 it may be difficult to discuss. However, it is important to have open and honest conversations with your child’s doctor and health care team to express your family’s feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families.

Parents or guardians are encouraged to think about where the child would be most comfortable: at home, in a home-like setting elsewhere, in the hospital, or in a hospice environment. Hospice care is a type of palliative care for people who are expected to live less than six months. It is designed to provide the best possible quality of life for people who are near the end of life. Nursing care and special equipment can make staying at home a workable alternative for many families. Some children may be happier if they can arrange to 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.

The next section helps explain clinical trials, which are research studies. Use the menu on the side of your screen to select About Clinical Trials, or you can select another section, to continue reading this guide. 

Ependymoma - Childhood - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2014

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu on the side of your screen.

Doctors and scientists are always looking for better ways to treat children with ependymoma. To make scientific advances, doctors create research studies involving volunteers, called clinical trials.

Many clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Children who participate in clinical trials are often among the first to receive new treatments before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.

There are also clinical trials that study new ways to ease symptoms and side effects during treatment and manage the late effects that may occur after treatment. Talk with your child’s doctor about clinical trials regarding side effects. In addition, there are ongoing studies about ways to prevent the disease.

People decide to participate in clinical trials for many reasons. For some patients, 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. Other people volunteer for clinical trials because they know that these studies are the only way to make progress in treating ependymoma. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with ependymoma.

Sometimes people have concerns that, by participating in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials is rare, and they are not used with childhood cancer clinical trials. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials.

In order to join a clinical trial, parents and children must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different than the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

For specific topics being studied for ependymoma, see the Latest Research section.

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.

Cancer.Net offers a lot of 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 tumor.

The next section helps explain the areas of research going on today about ependymoma. Use the menu on the side of your screen to select Latest Research, or you can select another section, to continue reading this guide. 

Ependymoma - Childhood - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2014

ON THIS PAGE: You will read about the scientific research being done now to learn more about ependymoma and how to treat it. To see other pages, use the menu on the side of your screen.

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 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 diagnostic and treatment options best for your child.

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. Although research in this area is early, studies are being done to find out if these genetic differences can help find new ways to treat ependymoma.

Improved radiation therapy techniques. Although the use of radiation therapy is not a standard cancer treatment for children younger than three, its usefulness and side effects are being studied in a clinical trial for children with ependymoma in this age group. In addition, new techniques for planning and delivering radiation therapy are also being evaluated that better target the tumor, reducing damage to healthy parts of the brain.

New combinations of chemotherapy and other treatments. New types of chemotherapy and combinations of 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 a tumor that was not completely removed during the original surgery. The risks and benefits of this are also being studied. 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.

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 tumor will come back after treatment.

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

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

The next section addresses how to cope with the symptoms of the disease or the side effects of its treatment. Use the menu on the side of your screen to select Coping with Side Effects, or you can select another section, to continue reading this guide. 

Ependymoma - Childhood - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2014

ON THIS PAGE: You will find out more about steps to take to help cope with physical, social, and emotional side effects. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu on the side of your screen.

Fear of treatment side effects is common after a diagnosis of a tumor but it may help to know that preventing and controlling side effects is a major focus of your child’s health care team. This is called palliative or supportive care, and it is an important part of the overall treatment plan, regardless of the stage of disease.

Common side effects from each treatment option for ependymoma are described in detail within the Treatment Options section. Learn more about the most common side effects of a tumor and different treatments, along with ways to prevent or control them. Side effects depend on a variety of factors, including the tumor’s stage, the length and dosage of treatment(s), and your child’s overall health.

Before treatment begins, talk with your child’s doctor about possible side effects of each type of treatment your child will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them. And, ask about the level of caregiving your child may need during treatment and recovery, as family members and friends often play an important role in the care of a child with ependymoma. Learn more about caregiving.

In addition to physical side effects, there may be emotional and social effects as well. Patients and their families are encouraged to share their feelings with a member of their health care team who can help with coping strategies, including concerns about managing the cost of your child’s medical care.

During and after treatment, be sure to tell the health care team about the side effects your child experiences, even if you feel they are not serious. Sometimes, side effects can last beyond the treatment period, called a long-term side effect. A side effect that occurs months or years after treatment is called a late effect. Treatment of both types of effects is an important part of survivorship care. Learn more by reading the After Treatment section or talking with your child’s doctor.

The next section helps explain medical tests and check-ups needed after finishing treatment. Use the menu on the side of your screen to select After Treatment, or you can select another section, to continue reading this guide. 

Ependymoma - Childhood - After Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2014

ON THIS PAGE: You will read about your child’s medical care after treatment is finished and why this follow-up care is important. To see other pages, use the menu on the side of your screen.

After treatment for ependymoma ends, talk with your child’s doctor about developing a follow-up care plan. This plan may include regular physical examinations and/or medical tests to monitor your child’s recovery for the coming months and years. All children treated for cancer, including ependymoma, should have life-long, follow-up care.

Follow-up care recommendations are specific to each child, because there are many factors that can affect your child’s recovery from ependymoma, such as tumor location, how much of the tumor could be removed during surgery, the need for and type of treatment after surgery, and your child’s age at the time of treatment.

The needs of your child should be closely monitored on an ongoing basis by the health care team. 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, or thought-process, therapy. Learn more about rehabilitation. Some children may need a tracheostomy, a surgical opening in the windpipe to help them breathe, and/or a gastrostomy, a surgical opening into the stomach where a feeding tube is inserted, after surgery. Others may develop hormonal problems or other new problems if the tumor recurs.

MRI scans are often recommended to watch for signs that the tumor is growing or has come back. Because most tumors that recur do so during the first several years after diagnosis, scans are performed most often during the first two to three years after treatment, and less often thereafter. However, because a tumor can recur many years after initial treatment, long-term follow-up care is extremely important.

Based on the type of treatment your child received, the doctor will determine what examination and tests are needed to check for long-term side effects and the possibility of secondary cancers. Your child’s doctor can recommend the necessary screening tests. Follow-up care should also address your child’s quality of life, including any developmental or emotional concerns. Learn more about childhood cancer survivorship.

The child’s family is encouraged to organize and keep a record of the child’s medical information. That way, as the child enters adulthood, he or she has a clear, written history of the diagnosis, the treatment given, and the doctor’s recommendations about the schedule for follow-up care. The doctor’s office can help you create this. This information will be valuable to doctors who care for your child during his or her lifetime. ASCO offers cancer treatment summary forms to help keep track of the cancer treatment your child received and develop a survivorship care plan once treatment is completed. Learn more about the next steps to take in survivorship.

The next section offers a list of questions you may want to ask. Use the menu on the side of your screen to select Questions to Ask the Doctor, or you can select another section, to continue reading this guide. 

Ependymoma - Childhood - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2014

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. To see other pages, use the menu on the side of your screen.

Talking often with the doctor is important to make informed decisions about your child’s health 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 an e-list and other interactive tools to manage your child’s care.

  • Where exactly is the tumor located?
  • Has the tumor spread? If not, is it likely to spread?
  • Can you explain my child’s pathology report (laboratory test results) to me?
  • What is your familiarity with my child's tumor type and its treatment?
  • What are the available treatment options?
  • What clinical trials are open to my child? Where are they located, and how do I find out more about them?
  • What is the chance for success with each treatment option?
  • 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?
  • Who will be part of my child’s health care team, and what does each member do?
  • Who will be coordinating my child’s overall treatment and follow-up care?
  • 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 he or she be able to go to school and perform his or her 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 related to my child’s cancer care, who can help me with these concerns?
  • What follow-up tests will my child need, and how often will he or she need them?
  • What support services are available to me? To my family?
  • Whom should I call for questions or problems?

The next section offers some more resources that may be helpful to you. Use the menu on the side of your screen to select Additional Resources, or you can select another section, to continue reading this guide.

Ependymoma - Childhood - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 08/2014

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. To go back and review other pages, use the menu on the side of your screen.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer, both 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 sections that may get you started in exploring the rest of Cancer.Net:

- Search for a specialist in your local area using this free database of doctors from the American Society of Clinical Oncology.

Review dictionary articles to help understand medical phrases and terms used in cancer care and treatment.

- Read more about the first steps to take when newly diagnosed with cancer.

- Find out more about clinical trials as a treatment option.

Learn more about coping with the emotions that a cancer diagnosis can bring, including those within a family or a relationship.

Find a national, not-for-profit advocacy organization that may offer additional information, services, and support for children with ependymoma.

- Explore next steps a person can take after active treatment is complete.

This is the end of Cancer.Net’s Guide to Childhood Ependymoma.
Use the menu on the side of your screen to select another section to continue reading this guide.