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.

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.

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.

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

• Radiation therapy

• Chemotherapy

• Physical, emotional, and social effects of cancer

• Remission and the chance of recurrence

• If treatment does not work

Surgery

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

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.

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.

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: www.survivorshipguidelines.org.

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.

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.

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.