Brain Stem Glioma - Childhood

ON THIS PAGE: You will find information about the estimated number of children and adolescents who will be diagnosed with brain stem glioma each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with 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 adolescents are diagnosed with brain stem glioma?

In 2023, approximately 3,920 brain and other central nervous system (CNS) tumors will be diagnosed in children ages 0 to 14 in the United States. After leukemia, CNS tumors are the second most common childhood cancers/tumors, accounting for about 26% of cases in children younger than 15.

An estimated 13% of all childhood CNS tumors are found in the brain stem. Approximately 75% of childhood brain stem gliomas are in the pons.

What is the survival rate for brain stem glioma?

There are different types of statistics that can help doctors evaluate a person’s chance of recovery from brain stem glioma. 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 brain stem glioma 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 childhood brain stem glioma 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.

About 3 in 4 children with all types of brain tumors combined survive at least 5 years after diagnosis. The survival rates for brain stem glioma vary based on several factors, including the grade of the brain stem glioma as either diffuse or focal . Other factors include the specific location of the tumor, a child’s age and general health, and how well the treatment plan works. Talk with your child’s doctor to learn more.

Experts measure relative survival rate statistics for brain stem glioma every 5 years. This means the estimate may not reflect the results of advancements in how brain stem glioma 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 American Cancer Society's (ACS) publication, Cancer Facts & Figures 2023, the ACS website, and 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). (All sources accessed February 2023.)

The next section in this guide is Medical Illustrations . It offers drawings of the brain stem and surrounding structures. 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 brain stem glioma. Use the menu to see other pages.

What are the risk factors for brain stem glioma?

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

Doctors and researchers do not know what causes most childhood tumors, including brain stem glioma. There is some evidence that genetic factors may play a role in a small percentage of brain stem gliomas.

The following genetic conditions are associated with a higher risk of developing a central nervous system (CNS) tumor, but they are not specifically associated with developing a brain stem glioma:

• Li-Fraumeni syndrome

• Neurofibromatosis type 1 (NF1)

• Nevoid basal cell carcinoma syndrome

• Tuberous sclerosis complex (TSC)

• Turcot syndrome

The next section in this guide is Symptoms and Signs . It explains what changes or medical problems brain stem glioma 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 stem glioma. They also do tests to learn if the tumor has spread to another part of the body from where it started. If the cancer has spread, it is called metastasis. Doctors may also do tests to learn which treatments could work best.

For most types of tumors, a biopsy is the only way to make a definite diagnosis, even if other tests can suggest that a tumor is present. During a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. However, diffuse brain stem glioma is unlike most other tumors. Brain stem glioma is usually diagnosed with magnetic resonance imaging (MRI) only (see below).

In general, a biopsy is avoided in children with diffuse brain stem glioma because the results of the biopsy do not change treatment options and the procedure can have serious risks. Sometimes, a biopsy may be used in clinical trials or when a brain stem glioma has unusual features. By testing the part of the tumor removed during a biopsy, doctors may find certain molecular features that can help plan treatment. As new treatments based on this molecular information increase and the risks of a biopsy decrease, these procedures may be done more often.

For a focal brain stem glioma, a biopsy and removing the tumor with surgery may be considered. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

How brain stem glioma is diagnosed

There are different tests used for diagnosing brain stem glioma and planning your child's care. Not all tests described here will be used for every person. 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 a brain stem glioma:

• MRI. An MRI produces detailed images of the inside of the body using magnetic fields, not x-rays. 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.

• 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 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 or liquid to swallow. For a brain stem glioma, this test generally does not provide enough information to make a definite diagnosis, and an MRI is still needed.

• Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. As explained above, a biopsy is generally not done for the more common, diffuse type of brain stem tumor. However, for a focal tumor, it is often used to find out the type of tumor. If possible, a doctor called a neurosurgeon will remove a small piece of tissue from the brain. A neurosurgeon specializes in treating central nervous system (CNS) tumors using surgery. 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.

After diagnostic tests are done, your child’s doctor will review the results with you. If the diagnosis is brain stem glioma, 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 brain stem glioma. 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 brain stem glioma. Use the menu to see other pages.

In general, tumors in children are 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 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 previous 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 should be treated at a specialized cancer center. Doctors at these centers have extensive experience in treating children and have access to the latest research. A doctor who specializes in treating children with cancer is called a pediatric oncologist. For brain stem glioma, a neuro-oncologist may also be involved with treatment. A neuro-oncologist is a doctor who specializes in central nervous system (CNS) tumors. 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 brain stem glioma is treated

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, dietitians, physical therapists, occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available. Learn more about the clinicians who provide cancer care.

Treatment options and recommendations depend on several factors, including the type and grade of the tumor, possible side effects, the family’s preferences, and the child’s overall health. The main types of treatments used for brain stem glioma in children are radiation therapy, chemotherapy, and surgery. Sometimes, these treatments are used together.

The treatment of brain stem glioma for children with the genetic condition neurofibromatosis type 1 (NF1) may differ. A tumor in a child with NF1 may be low-grade even though it looks diffuse. Therefore, an approach called "active surveillance" or "watchful waiting" may be recommended. This approach is when the patient is closely monitored to watch for signs that the tumor is worsening. Active treatment would begin if the tumor started to grow and spread.

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 you can expect during the treatment. These types of conversations are called “shared decision-making.” Shared decision-making is when you and your child's doctors work together to choose treatments that fit the goals of your child’s care. Shared decision-making is important for brain stem glioma because there are different treatment options. Learn more about making treatment decisions .

The common types of treatments used for brain stem glioma are described below. Your child’s care plan may also include treatment for symptoms and side effects, an important part of care. Learn more about preparing your child for treatment.

READ MORE BELOW:

• Radiation therapy

• Chemotherapy

• Targeted therapy

• Surgery

• Physical, emotional, social, and financial effects of a CNS tumor

• Remission and the chance of recurrence

• If treatment does not work

Radiation therapy

Radiation therapy is the most common treatment for children with brain stem glioma. Radiation therapy is the use of high-energy x-rays or other particles to destroy tumor cells. A doctor who specializes in giving radiation therapy to treat a tumor 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. A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period of time.

Proton beam therapy is a type of external-beam radiation therapy that uses protons rather than x-rays. It is a newer type of radiation therapy that may be an option for children with brain stem glioma. At high energy, protons can destroy cancer cells.

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. Because radiation therapy can sometimes cause problems with the growth and development of a child’s brain, the doctor may choose to treat the tumor a different way. To avoid or reduce the need for radiation therapy in young children, the doctor may first use chemotherapy (see below) to shrink the tumor.

Learn more about the basics of radiation therapy .

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Chemotherapy

Chemotherapy is the use of drugs to destroy tumor cells, usually by keeping the tumor cells from growing, dividing, and making more cells. Chemotherapy may be given through the bloodstream to reach tumor cells throughout the body. When a drug is given this way, it is called systemic therapy. It may also be given locally, which is when the medication is applied directly to the tumor or kept in a single part of the body.

Chemotherapy is given by a medical oncologist, which is a doctor who specializes in treating a tumor with medication, or a pediatric oncologist. Medications are often given through an intravenous (IV) tube placed into a vein using a needle or as a pill or capsule that is swallowed (orally). If your child is given oral medications to take at home, be sure to ask your child's health care team about how to safely store and handle them.

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.

Chemotherapy by itself is not an effective treatment for brain stem glioma. Sometimes, a doctor may use chemotherapy before, during, or after radiation therapy.

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.

The medications used to treat tumors 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. It is also important to let your child's doctor know if they are taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with tumor medications, causing unwanted side effects or reduced effectiveness. Learn more about your child’s prescriptions by using searchable drug databases .

Learn more about the basics of chemotherapy .

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Targeted therapy (updated 03/2023)

Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. This type of treatment blocks the growth and spread of cancer cells and limits damage to healthy cells.

Not all tumors have the same targets. To find the most effective treatment, your doctor may run tests to identify the genes, proteins, and other factors in your tumor. This helps doctors better match each patient with the most effective treatment whenever possible. In addition, research studies continue to find out more about specific molecular targets and new treatments directed at them. Learn more about the basics of targeted treatments.

In 2022, the U.S. Food and Drug Administration (FDA) approved dabrafenib (Tafinlar) in combination with trametinib (Mekinist) for the treatment of children with both low-grade and high-grade glioma with a BRAF V600E mutation that is either metastatic or that cannot be removed with surgery. To receive the combination, a child's cancer must have either gotten worse following previous treatment or there must be no other satisfactory treatment options available. In 2023, the FDA also approved the combination of dabrafenib with trametinib for children with low-grade glioma with a BRAF V600E mutation who are 1 or older. A BRAF V600 mutation is a specific change in the tumor’s BRAF gene. Dabrafenib is a targeted therapy that works by targeting the BRAF mutation, and trametinib is a targeted therapy that targets the MEK protein, which is involved in cancer growth and survival. Dabrafenib is given as an oral medication twice daily and trametinib is given as an oral medication once daily.

Talk with your doctor about possible side effects for a specific medication and how they can be managed.

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Surgery

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 central nervous system (CNS) tumor using surgery. Surgery is used to treat brain stem glioma only when the tumor looks focal on an MRI scan (see Diagnosis ). This means that it may be possible to remove the tumor without damaging the brain, such as when a tumor grows out from the brain stem instead of into the brain stem. Before surgery, talk with your child's health care team about the possible side effects from the specific surgery your child will have. Learn more about the basics of surgery .

For most children with diffuse types of brain stem glioma, surgery is not recommended or possible because of the location of the tumor and the risk involved. This type of tumor may be called inoperable or unresectable. The doctor will recommend other treatment options.

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Physical, emotional, social, and financial effects of a CNS tumor

A CNS tumor 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 and 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 tumor.

Palliative and supportive 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 grade of tumor, may receive this type of care. And it often works best when it is started right after the diagnosis. People who receive palliative and supportive care along with treatment for the tumor 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, such as chemotherapy, surgery, or radiation therapy, to improve symptoms.

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 and supportive care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.

Cancer care is often expensive, and navigating health insurance can be difficult. Ask your doctor or another member of your health care team about talking with a financial navigator or counselor who may be able to help with your financial concerns .

During treatment, your child’s health care team may ask you to answer questions about your child’s symptoms and side effects and 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 and supportive care in a separate section of this website.

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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 having “no evidence of disease” or NED.

A remission may be temporary or permanent. This uncertainty causes many people to worry that the tumor will come back. While many remissions are permanent, it is important to talk with your child’s doctor about the possibility of the tumor returning. Understanding your child’s risk of recurrence and the treatment options may help you feel more prepared if the disease 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 (regional recurrence), or in another place (distant recurrence).

If a recurrence happens, a new cycle of testing will begin 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. Treatment for recurrent brain stem glioma depends on the type of tumor, such as whether it is diffuse or focal, and the type of treatment that was given for the original tumor. Depending on the situation, the doctor may recommend either surgery or chemotherapy. Your child’s doctor may suggest clinical trials that are studying new ways to treat a recurrent brain stem glioma. Whichever treatment plan you choose, palliative and supportive care will be important for relieving symptoms and side effects.

A recurrent tumor may bring up emotions such as disbelief or fear. You and your family are encouraged to talk with your child's health care team about these feelings and ask about support services to help you 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 a CNS tumor, sometimes it is not. If a child’s tumor cannot be cured or controlled, this is called an advanced or terminal tumor. This diagnosis is stressful, and advanced brain stem glioma 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. Parents and guardians are encouraged to talk with the health care team about hospice 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.

Some families find comfort in getting involved in research efforts to advance knowledge about brain stem glioma. Learn more about tissue donation . Please note that this link takes you to a separate website.

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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 children with a CNS tumor. 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 brain stem glioma and how to treat it. Use the menu to see other pages.

Doctors are working to learn more about brain stem glioma, ways to prevent it, how to best treat it, and how to provide the best care to children diagnosed with brain stem glioma. 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.

• Improved imaging and surgery. Imaging techniques are being developed that help the surgeon pinpoint the tumor’s exact location to reduce or prevent damage to the healthy parts of the brain. For example, image-guided stereotaxis allows surgeons to visualize and operate on the brain using 3-dimensional computerized outlines of the brain and the tumor. Along with specialized software, these images help guide the surgeon to the tumor. Tumors that were once considered inoperable can now be removed using this technique. In certain instances, these imaging techniques are also being used to better understand the benefits and risks of using a biopsy to diagnose children with diffuse brain stem glioma.

• Improved radiation therapy. Conformal radiation therapy is a way to give high doses of radiation therapy directly to a tumor and not healthy tissue. This technique creates detailed, 3-dimensional maps of the brain and the tumor so doctors know exactly where to deliver the radiation therapy. In addition, drugs designed to enhance the effectiveness of radiation therapy or to slow or stop tumor growth are also being studied.

• Molecular features. Other research is focused on evaluating the abnormal molecular features of brain stem glioma cells to better diagnosis and categorize these tumors. These features are found by examining the tumor after a biopsy and may help doctors find treatments that target the tumor based on the specific molecular features (see below).

• Targeted therapy. Targeted therapy is a treatment that targets the tumor’s specific genes, proteins, or the tissue environment that contributes to a tumor's growth and survival. This type of treatment blocks the growth and spread of tumor cells while limiting damage to healthy cells. For brain stem glioma, researchers are studying new treatments that target certain molecular features found in the tumor (see above). Learn more about the basics of targeted treatments .

• Immunotherapy. Immunotherapy, also called biologic therapy, is designed to boost the body's natural defenses to fight the tumor. It uses materials made either by the body or in a laboratory to improve, target, or restore immune system function. For brain stem glioma, doctors are researching vaccines that may treat the tumor. Learn more about the basics of immunotherapy and cancer vaccines .

• New ways to give chemotherapy. The blood-brain barrier, which protects the brain and spinal cord from damaging chemicals, also keeps out many types of chemotherapy. New methods of giving chemotherapy called convection-enhanced delivery are also being studied. This method uses a narrow tube called a catheter that is placed into the brain so chemotherapy can be directed at the tumor.

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

• Tissue donation. Some families find that donating tissue feels appropriate as part of the grieving process after their child’s death. Similar to organ donation, tissue donations can help researchers learn more about how tumors change and spread to help develop new treatments for children with brain stem glioma. Talk with your child's doctor for more information about tissue donation.

Looking for More About the Latest Research?

If you would like more information about the latest areas of research in brain stem glioma, 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 .

• Get updates from Cancer.Net delivered right to your inbox. Subscribe to the Inside Cancer.Net email newsletter.

• 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 a brain stem glioma 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 treatment is finished and why this follow-up care is important. Use the menu to see other pages.

Care for children diagnosed with brain stem glioma 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 brain stem glioma 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. Magnetic resonance imaging (MRI) scans done at regular intervals along with a history and physical examination are the best way to monitor if the tumor is stable or is trying to come back. In most patients, signs and symptoms often come before the changes seen on imaging tests. If you notice new symptoms in your child, contact your child's care team and request to schedule a clinic visit and an MRI scan.

Cancer rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, occupational 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 tumor has come back. A tumor 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, but testing recommendations depend on several factors, including the type and grade of tumor first diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results can 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 childhood brain stem glioma

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 can occur almost anywhere in the body. They include physical problems, such as heart and lung problems, and second cancers, which is a new cancer that happens in someone who has had cancer before. They also include emotional problems, such as anxiety and depression, problems with memory, thinking, attention, and learning.

Based on the type of treatment your child received, the doctor will recommend what examinations and tests are needed to check for late effects. The possible late effects from specific treatments are discussed below:

• Radiation therapy to the brain and spine can cause cognitive and endocrine (hormonal) symptoms over time. The severity of these late effects vary depending on the dose given and your child’s age.

• The risks and possible side effects of surgery vary widely, depending on the location and features of the tumor.

• The risks of chemotherapy and the chance of a second cancer strongly depend on the specific drugs used and the doses.

For each of these issues, it is important to discuss the specific aspects of the tumor and the options for treatment with the doctors that are involved in your child's care before, during, and after treatment. Follow-up care should also address your child’s quality of life, including any developmental or emotional concerns.

The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult cancer 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. The American Society of Clinical Oncology (ASCO) offers forms to help keep 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. This decision depends on several factors, including the type and grade of tumor, treatments received, 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 treatment for brain stem glioma 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 brain stem glioma. 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 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 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 tumor has been diagnosed?

• Where exactly is the tumor located?

• Is the tumor diffuse or focal? What does this mean?

• Can you explain my child’s pathology report (laboratory test results) to me?

• Are other tests needed to confirm this diagnosis?

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

Questions to ask about choosing a treatment and managing side effects

• What are the treatment options?

• What types of research are being done for brain stem glioma in clinical trials? Do clinical trials offer additional treatment options for my child?

• What new research is being done at other treatment centers? Where are they located? Are these clinical trials open to my child?

• 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 are the chances for success with the planned treatments?

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

• If I have questions or problems, who should I call?

Questions to ask about having radiation therapy

• What type of treatment is recommended?

• What is the goal of this treatment?

• How long will it take to give this treatment?

• How can I prepare my child for having this treatment?

• What side effects can my child expect during or after each treatment?

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

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

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

Questions to ask about having chemotherapy

• What type of treatment is recommended?

• What is the goal of this treatment?

• How long will it take to give this treatment?

• Will my child receive this treatment at a hospital or clinic? Or will they take it at home?

• How can I prepare my child for having this treatment?

• What side effects can my child expect during or after each treatment?

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

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

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

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?

• How can I prepare my child for having this surgery?

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

• 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 child’s records?

• When should my child return to their primary care doctor for regular medical care?

• 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.