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Brain Stem Glioma - Childhood - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2014

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

About the brain stem

The brain stem connects the brain to the spinal cord. It is the lowest portion of the brain, located above the back of the neck. The brain stem controls many of the body’s basic functions, such as motor skills, sensory activity, coordination and walking, the beating of the heart, and breathing. It has three parts:

  • The midbrain, which develops from the middle of the brain
  • The medulla oblongata, which connects to the spinal cord
  • The pons, which is located between the medulla oblongata and the midbrain

About brain stem glioma

Brain stem glioma is a type of central nervous system (CNS; brain and spinal cord) tumor that begins when normal cells in the brain stem change and grow uncontrollably, forming a mass called a tumor. 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. A glioma is a tumor that grows from a glial cell, which is a supportive cell in the brain.

Usually, by the time brain stem glioma is diagnosed, it is most often diffuse, which means it has spread freely through the brain stem. This type of tumor is typically very aggressive, meaning that it grows and spreads quickly. A small percentage of brain stem tumors are very localized, called focal tumors. A focal tumor is often less likely to grow and spread quickly.

Brain stem glioma occurs most commonly in children between five and 10 years old. Most brain stem tumors develop in the pons and grow in a part of the brain stem where it can be difficult to perform surgery, making brain stem glioma challenging to treat (see the Treatment Options section).

This section covers brain stem glioma diagnosed in children. Read more about brain tumors in adults.

Looking for More of an Overview?

If you would like additional introductory information, explore these related items. Please note these links take you to other sections on Cancer.Net:

  • ASCO Answers Fact Sheet: Read a one-page fact sheet (available as a PDF) that offers an easy-to-print introduction to CNS tumors.
  • Cancer.Net Patient Education Videos: View short videos led by ASCO experts in childhood cancers and brain tumors that provide basic information and areas of research.

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

Brain Stem Glioma - Childhood - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2014

ON THIS PAGE: You will find information about how many people learn they have brain stem glioma 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.

Approximately 4,000 CNS tumors are diagnosed each year in children younger than 20. Brain stem tumors account for 10% of all childhood brain tumors. After leukemia, CNS tumors are the second most common childhood cancer, accounting for about 21% of cancer in children younger than 15.

The survival rate is the percentage of people who survive after the tumor is detected, excluding those who die from other diseases. The survival rate for children with brain stem glioma varies depending on the location of the tumor. Long-term survival rates for children with a tumor in the midbrain or the medulla oblongata range from 65% to 90%. However, a pontine glioma, which is a tumor located in the pons, is more difficult to treat and often worsens quickly. It is uncommon for a child with a tumor in this location to live longer than 12 to 14 months after diagnosis.

Survival statistics should be interpreted with caution. Estimates are based on data from thousands of children with this type of tumor, 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 a brain stem glioma. Because the survival statistics are measured in multi-year intervals, they may not represent advances made in the treatment or diagnosis of this cancer. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society's publication, Cancer Facts and Figures 2014 and St. Jude Children’s Research Hospital.

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

Brain Stem Glioma - Childhood - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2014

ON THIS PAGE: You will find out more about the factors that increase the chance of developing brain stem glioma. 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 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 don’t 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. Genetic conditions associated with a higher risk of developing a CNS tumor include Li-Fraumeni syndrome, neurofibromatosis type 1 (NF1), nevoid basal cell carcinoma syndrome, tuberous sclerosis, and Turcot syndrome.

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

Brain Stem Glioma - Childhood - Symptoms and signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2014

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 a brain stem glioma may experience the following symptoms or signs. Sometimes, children with a brain stem glioma do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not a brain stem glioma.          

  • Double vision or not being able to close the eyelids
  • Drooping of the face
  • Difficulty chewing and swallowing food
  • Weakness in the arms and legs, clumsiness or wobbliness, and difficulty walking
  • Difficulty talking
  • Headache
  • Vomiting

If you are concerned about one or more of the symptoms or signs on this list, please talk with your child’s doctor. The 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 brain stem glioma 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 the health care team about the 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.  

Brain Stem Glioma - Childhood - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2014

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 brain stem glioma and 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 other types of tumors, a biopsy is the only way to make a definitive diagnosis. In recent years, biopsies have not been used and, in some instances, specifically 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. However, biopsies may be used when a brain stem glioma has unusual features. In addition, as new treatments based on molecular information from the tumor increase and the risk of a biopsy decreases, these procedures may be done more often.

For most patients, diagnosing a brain stem glioma is done with magnetic resonance imaging (MRI) alone (see below). Because of this, diffuse brain stem glioma is unlike most other tumors. For a focal tumor, 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. Other imaging tests may be used to find out whether the tumor has spread. This list describes options for diagnosing brain stem glioma, and not all tests listed will be used for every person. 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 a brain stem glioma:

MRI. An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. 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 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 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. 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. 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 a CNS tumor using surgery. 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.

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

Brain Stem Glioma - Childhood - Stages and Grades

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2014

ON THIS PAGE: You will learn about how doctors describe the growth or spread of brain stem glioma. This is called the stage or 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 childhood brain stem glioma. A tumor may be classified as either diffuse or focal. In addition, the tumor may be classified by its grade.

Grade. Grade describes how much 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 looks similar to healthy tissue and contains different cell groupings, it is called differentiated or a low-grade tumor. If the tumor 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.

Below are the general classifications for brain stem glioma:

Diffuse brain stem glioma. This type of tumor spreads freely throughout the pons and often spreads to the midbrain, the medulla, or nearby parts of the brain. These tend to be high-grade tumors; they are very aggressive and contain abnormal-looking cells.

Focal brain stem glioma. About 20% of brain stem tumors are focal, meaning they occur in one area or are contained within a small portion of the brain stem. They usually occur in the midbrain or medulla, rather than the pons. These are usually benign or low-grade tumors; they are less aggressive and the tumor cells look fairly normal.

Recurrent brain stem glioma: Recurrent brain stem glioma is a tumor that has come back after treatment. If there is a recurrence, the tumor may need to be graded again using the system above.

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

Brain Stem Glioma - Childhood - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2014

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

In general, tumors in children are 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 are treated as part of a clinical trial. Clinical trials are research studies that compare standard treatments (the best proven treatments available) with 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 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 CNS tumors. 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.

Descriptions of the most common treatment options for brain stem glioma are listed below. 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. Your child’s care plan may also include treatment for symptoms and side effects, an important part of cancer care. Three types of treatments are used to treat brain stem glioma in children: 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 may differ. A tumor in a child with NF1 may be low-grade even though it looks diffuse, and therefore, active surveillance or watchful waiting may be recommended to watch the tumor for signs that it is worsening. 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. Also, talk about the goals of each treatment with the doctor and what you can expect during the treatment. Learn more about making treatment decisions

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. When radiation therapy 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.

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 normal growth and development of a child’s brain, the doctor may choose to treat the tumor in another way. To avoid or reduce the need for radiation therapy in young children, the doctor may first use chemotherapy to shrink the tumor. Learn more about radiation therapy.

Chemotherapy

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

Systemic chemotherapy is delivered through the bloodstream to reach cancer 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 by itself is not an effective treatment for brain stem glioma; however, sometimes, a doctor may use chemotherapy at the same time as 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 once treatment is finished.

Learn more about chemotherapy and preparing for treatment. The medications used to treat brain stem glioma 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.

Surgery

Surgery is the removal of the tumor and surrounding tissue during an operation. A neurosurgeon is a doctor who specializes in treating a 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. 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. Learn more about surgery.

Getting care for symptoms and side effects

Brain stem glioma 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 person’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with his or her physical, emotional, and social needs.

Palliative care can help a person at any stage of illness. People often receive treatment for the tumor and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and families 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 chemotherapy, surgery, and radiation therapy. 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 your 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 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 people feeling worried or anxious that the tumor will come back. While many remissions are permanent, it’s important to talk with your child’s doctor about the possibility of the tumor returning. Understanding the 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).

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 has 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 radiation therapy, chemotherapy, and surgery, 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.

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.

A recurrent tumor may bring up emotions such as disbelief or fear. You and your family are encouraged to talk with the health care team about these feelings and ask about support services to help you cope. Learn more about dealing with a recurrence.

If treatment fails

Although treatment is successful for the majority of children with a 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 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. Some families find comfort in getting involved in research efforts to advance knowledge about brain stem glioma. Learn more about tissue donation.

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.  

Brain Stem Glioma - Childhood - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2014

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 brain stem glioma. 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 children, 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 brain stem glioma. Even if they do not benefit directly from the clinical trial, their participation may benefit future children with brain stem glioma.

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. 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.

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 from 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 brain stem glioma, learn more in 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 parents talk with the doctor and researchers about who will be providing their child’s treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses 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 this type of cancer. Use the menu on the side of your screen to select Latest Research, or you can select another section, to continue reading this guide.  

Brain Stem Glioma - Childhood - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2014

ON THIS PAGE: You will read about the scientific research being done now to learn more about brain stem glioma 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 brain stem glioma, 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.

Improved imaging and surgery. Imaging techniques are being developed that help the surgical oncologist 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 three-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 directly to a tumor and not healthy tissue. This technique creates detailed, three-dimensional maps of the brain and 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 eventually help doctors find treatments that target the tumor based on the specific molecular features.

Immunotherapy. Immunotherapy, also called biologic therapy, is designed to boost the body's natural defenses to fight the cancer. 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 immunotherapy and cancer vaccines.

New ways to give chemotherapy. The blood-brain barrier, which normally serves to protect 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.

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

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 doctor for more information about tissue donation. 

Looking for More About the Latest Research?

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

  • Visit ASCO’s CancerProgress.Net website to learn more about the historical pace of research for childhood cancers. Please note this link takes you to a separate ASCO website.

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.  

Brain Stem Glioma - Childhood - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2014

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 or grade of disease.

Common side effects from each treatment option for brain stem glioma 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 disease’s grade, the length and dosage of treatment(s), and your child’s overall health. Also, side effects of newer treatments or treatments in clinical trials may be different and not as well studied as older treatments.

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 brain stem glioma. 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 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 cancer 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.  

Brain Stem Glioma - Childhood - After Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2014

ON THIS PAGE: You will read about your child’s medical care after brain stem glioma 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 brain stem glioma 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 brain stem glioma should have life-long, follow-up care.

Your child’s follow-up care plan and the long-term risks of treatment depend on several factors, such as the type of tumor and its location, your child’s age when diagnosed, and the type of treatment. For example, radiation therapy to the brain and spine can cause cognitive (thought-process) and endocrine (hormonal) symptoms over time, although the severity can vary depending on the dose given and your child’s age. Similarly, the risks and possible side effects of surgery vary widely, depending on the location and features of the tumor. Likewise, the risks of chemotherapy and the chance of a secondary tumor strongly depend on the specific drugs used and the dosage. 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.

Based on the type of treatment your child received, the doctor will determine what examinations and tests are needed to check for long-term side effects and the possibility of a secondary tumor. 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 treatment summary forms to help keep track of the treatment your child received and develop a survivorship care plan once treatment is completed.

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

Brain Stem Glioma - Childhood - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2014

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.

  • 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?
  • What are the treatment options?
  • What clinical trials are open to my child at this center? How do I find out more about them?
  • What new research is being done at other treatment centers? Where are they located, and 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 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 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 medical 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 my child? 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.  

Brain Stem Glioma - Childhood - Patient Information Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 03/2014

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about care and treatment for a child with brain stem glioma. This is the final page of Cancer.Net’s Guide to Childhood Brain Stem Glioma. 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 being diagnosed with a CNS tumor, both for the patient 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 medical care and treatment.

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

- Learn more about coping with the emotions that a tumor 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 people with brain stem glioma.

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

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