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Central Nervous System Tumors - Childhood - Introduction

Approved by the Cancer.Net Editorial Board, 01/2019

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 Central Nervous System Tumors. Use the menu to see other pages. Think of that menu as a roadmap for this complete guide.

A central nervous system (CNS) tumor begins when healthy cells in the brain or the spinal cord change and grow out of control, forming a mass. A tumor can be either cancerous or benign. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. A benign tumor means the tumor can grow but will not spread.

A CNS tumor is especially problematic because a person’s thought processes and movements may be affected. This type of tumor may be challenging to treat because the tissues around the tumor are often vital to the body’s functioning. The treatment of CNS tumors in infants and young children may be especially challenging because a child's brain is still developing.

The brain is the center of thought, memory, and emotion. It controls the 5 senses, which include smell, touch, taste, hearing, and sight. It also controls movement and other basic functions of the body, including heartbeat, circulation, and breathing. The spinal cord consists of nerves that carry information back and forth between the body and the brain.

Anatomy of the brain

The brain is made up of 4 major parts: the cerebrum, cerebellum, brain stem, and meninges.

  • The cerebrum, the largest part of the brain, contains 2 cerebral hemispheres and is divided into 4 lobes where specific functions occur.

    • The frontal lobe controls reasoning, emotions, problem solving, and parts of speech and movement

    • The parietal lobe controls the sensations of touch, pressure, pain, and temperature

    • The temporal lobe controls memory and the sense of hearing

  • The occipital lobe controls vision

  • The cerebellum, or "little brain," is located underneath the cerebrum. The cerebellum controls coordination and balance.

  • The brain stem, which is the lowest portion of the brain and connects to the spinal cord, controls involuntary functions essential for life, such as a person’s heartbeat and breathing.

  • The meninges are the membranes that surround and protect the brain and spinal cord. There are 3 meningeal layers, called the dura mater, arachnoid, and pia arachnoid.

Types of CNS tumors

There are many different types of CNS tumors. Some are cancerous and very likely to grow and spread. These are often called very aggressive or high grade. There are also less aggressive types, often called low grade. And some types are noncancerous and not likely to grow and spread. In addition, there are variations within each type that affect how quickly the tumor will grow. Many of these differences depend on genetic changes found within the tumor (see Diagnosis).

The following types of CNS tumors are most common among children:

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

Looking for More of an Introduction?

If you would like more of an introduction, explore these related items. Please note that these links will take you to other sections on Cancer.Net:

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

Central Nervous System Tumors - Childhood - Statistics

Approved by the Cancer.Net Editorial Board, 01/2019

ON THIS PAGE: You will find information about the number of children who are diagnosed with a CNS tumor each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors. Use the menu to see other pages.

Approximately 3,540 brain and other CNS tumors will be diagnosed this year in children ages 0 to 14 in the United States. After leukemia, brain and other CNS tumors are the second most common childhood cancers, accounting for about 26% of cancer in children younger than 15.

As explained in the Introduction, there are several types of CNS tumors diagnosed in children, and survival rates are different for each. The 5-year survival rate tells you what percent of children live at least 5 years after the tumor is found. Percent means how many out of 100. The 5-year survival rate for children with a CNS tumor, excluding benign brain tumors, is 74%. However, the survival rate for a CNS tumor depends on many factors, including the type of tumor diagnosed and its stage (see Stages and Grades).

It is important to remember that statistics on the survival rates for children with a CNS tumor are an estimate. The estimate comes from annual data based on the number of children with this cancer in the United States. Also, experts measure the survival statistics every 5 years. So the estimate may not show the results of better diagnosis or treatment available for less than 5 years. Talk with your child’s doctor if you have any questions about this information. Learn more about understanding statistics.

Read more about statistics for a specific type of CNS tumor. For example, review the Statistics section in Cancer.Net’s guide to astrocytoma, if that is the specific diagnosis.

Statistics adapted from the American Cancer Society's (ACS) publication, Cancer Facts & Figures 2020, 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 2012–2016 (published November 2019, all accessed January 2020).

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

Central Nervous System Tumors - Childhood - Medical Illustrations

Approved by the Cancer.Net Editorial Board, 01/2019

ON THIS PAGEYou will find a drawing of the main body parts affected by a childhood CNS tumor. Use the menu to see other pages.

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

The next section in this guide is Risk FactorsIt explains the factors that may increase the chance of developing a childhood CNS tumor. Use the menu to choose a different section to read in this guide.

Central Nervous System Tumors - Childhood - Risk Factors

Approved by the Cancer.Net Editorial Board, 01/2019

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

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.

The cause of most CNS tumors in children is not known. Researchers are studying possible causes of CNS tumors, including viruses. Head injury and cell phone use do not appear to cause a CNS tumor.

Different types of CNS tumors occur in different age groups. For example, some types of CNS tumors are more common in children younger than 3.

A small number of CNS tumors occur in families. Tell your doctor if multiple members of your family have a history of cancer, especially cancer diagnosed at a young age.

The following factors may raise a child’s risk of developing a CNS tumor:

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

Central Nervous System Tumors - Childhood - Symptoms and Signs

Approved by the Cancer.Net Editorial Board, 01/2019

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

Children with a CNS tumor may experience the following symptoms or signs. Sometimes, children with a CNS tumor do not have any of these changes. Or, the cause of a symptom may be a different medical condition that is not a tumor.

The symptoms of a CNS tumor can affect any of the brain’s functions and depend on where the tumor is located. A CNS tumor may cause the following symptoms:

  • Headache, which may wake a child up at night or develop early in the morning

  • Unexplained, persistent nausea and projectile vomiting

  • Weakness or clumsiness that is new, such as sudden difficulty walking and balancing, that seems to get worse

  • New vision problems

  • Developmental delay, loss of development milestone, or decline in school performance

  • Early or delayed puberty or delayed or abnormal growth

  • Pain, especially back pain

  • Irritability, listlessness, or changes in personality

  • A seizure or convulsion, which are sudden involuntary movements of a person’s muscles

  • Staring or repetitive automatic movements, such as a neck tilt or a squint

In a baby, the only symptom may be that the head is growing too fast. An infant’s skull can expand to make room for a growing tumor, so the baby may have a larger than expected head.

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

If a tumor is diagnosed, relieving symptoms remains an important part of care and treatment. This may be called palliative care or supportive care. It is often started soon after diagnosis and continued throughout treatment. 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 in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Use the menu to choose a different section to read in this guide.

Central Nervous System Tumors - Childhood - Diagnosis

Approved by the Cancer.Net Editorial Board, 01/2019

Diagnosis

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 tumor. They also do tests to learn if a tumor has spread to another part of the body from where it started. If this happens, it is called metastasis. For example, imaging tests can show if the tumor has spread. Imaging tests show pictures of the inside of the body. Doctors may also do tests to learn which treatments could work best.

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.

This section describes options for diagnosing a CNS tumor. Not all tests listed below 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 a CNS tumor:

  • Magnetic resonance imaging (MRI). This is the primary test used to find a brain tumor and plan treatment. 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 or liquid 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 special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a patient’s vein or given as a pill or liquid to swallow. Although MRI (see above) is the preferred test, a CT scan may be an option for diagnosing a brain tumor.

  • Biopsy. A biopsy for a CNS tumor is usually done with surgery to remove 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. The type of biopsy performed depends on the location of the tumor.

  • Molecular testing of the tumor. Your doctor may recommend running laboratory tests on a tumor to identify specific genes, proteins, and other factors unique to the tumor. Results of these tests may help determine your child's treatment options. This is not currently done for all types of childhood CNS tumors but may be done for some tumor types and in clinical trials (see Latest Research).

After diagnostic tests are done, your child’s doctor will review all of the results with you. If the diagnosis is a CNS tumor, 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.

Central Nervous System Tumors - Childhood - Stages and Grades

Approved by the Cancer.Net Editorial Board, 01/2019

ON THIS PAGE: You will learn about how doctors describe a tumor’s growth or spread. This is called the stage or grade. Use the menu to see other pages.

Stages

Staging is a way of describing where a tumor is located, if or where it has spread, and whether it is affecting other parts of the body. Several types of childhood CNS tumors can spread through the spinal fluid that surrounds the brain and the spine. This information helps the doctor plan treatment and determine the child’s prognosis, which is the chance of recovery.

Grades

In addition to staging, doctors describe a CNS tumor by its grade. The grade describes how much tumor cells look like healthy cells when viewed under a microscope. The doctor compares the tumor 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 has 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." For some CNS tumors, doctors also include the genetic features of a tumor in the grade.

For most types of CNS tumors, the tumor is described as either high-grade or low-grade, depending on specific genetic changes in the tumor and what the tumor tissue looks like under the microscope. In general, a child with a low-grade tumor has a better prognosis.

Recurrent CNS tumor

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

There are different stage descriptions for different types of tumors. Read more about staging for a specific type of CNS tumor. For example, review the Stages and Grades section in Cancer.Net’s guide to astrocytoma, if that is the specific diagnosis.

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

Central Nervous System Tumors - Childhood - Types of Treatment

Approved by the Cancer.Net Editorial Board, 01/2019

ON THIS PAGE: You will learn about the different types of treatments doctors use for children with a CNS tumor. 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. 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 with a CNS tumor 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 a tumor is called a pediatric 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.

Treatment overview

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 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 CNS tumor, whether it is cancerous, the stage and/or grade of the tumor, possible side effects, the family’s preferences, and the child’s age and overall health. For instance, radiation therapy is often limited in children younger than 3 years old, because extensive radiation therapy can cause learning and memory problems in the future. Your child’s care plan may also include treatment for symptoms and side effects, an important part of medical care. 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 talks are called “shared decision making.” Shared decision making is when you and the doctors work together to choose treatments that fit the goals of your child’s care. Shared decision making is particularly important for a CNS tumor because there are different treatment options. Learn more about making treatment decisions.

Descriptions of the common types of treatments used for specific CNS tumors are listed below, followed by more details about each type of treatment.

Astrocytoma. Treatment options often depend on the grade of the tumor.

  • For low-grade astrocytoma, options include surgery, chemotherapy, radiation therapy, or combinations of these treatments. The types of treatments used depend on the tumor's location, how easily it can be removed with surgery, and a child's age. For younger children, surgery plus chemotherapy or limited radiation therapy may be an option. For older children, radiation therapy without surgery may be used.

  • For high-grade astrocytoma, surgery plus radiation therapy and chemotherapy are usually given.

Learn more about the treatment of astrocytoma.

Brain stem glioma. Treatment for brain stem glioma generally includes radiation therapy. Currently, chemotherapy does not appear to lengthen the lives of children with brain stem glioma. However, new drugs are being researched for brain stem glioma in clinical trials. Learn more about the treatment options for brain stem glioma.

Ependymoma. Treatment for ependymoma includes surgery and radiation therapy. Chemotherapy may also be used for infants and very young children with ependymoma. It may also be used for a short time to help shrink a tumor so it can be completely removed with surgery. Learn more about treatments for ependymoma.

Germ cell tumor. Surgery, chemotherapy, and/or radiation therapy are usually used to treat a germ cell tumor. Learn more about how a germ cell tumor is treated.

Medulloblastoma. Treatment options for medulloblastoma include surgery, radiation therapy, and chemotherapy. Learn more about these treatment options for medulloblastoma.

Surgery

Surgery is the removal of the tumor and some surrounding healthy tissue during an operation. It is almost always used to find out the type of tumor, either through a biopsy or during treatment when the tumor can be removed without significant damage to the brain. A neurosurgeon is a doctor who specializes in treating a tumor in the brain or spine with surgery. Sometimes, a tumor spreads and grows between healthy nerve cells, making surgery difficult.

In certain situations, surgery can damage parts of the brain near the tumor, affecting arm and leg movement, breathing, swallowing, eye movement, or consciousness. Before surgery, talk with the health care team about the possible side effects from the specific surgery your child will have. Learn more about the basics of surgery.

Some tumors cannot be removed by surgery because of their location. These tumors are called inoperable or unresectable. In these instances, the doctor will recommend other treatment options.

Radiation therapy

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 treatment is given using implants, it is called internal radiation therapy or brachytherapy. A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period of time.

Stereotactic radiosurgery is a way to deliver high doses of radiation therapy directly to a tumor and not to healthy tissue. This technique makes detailed, 3-dimensional maps of the brain and tumor, so doctors can pinpoint where to direct the radiation treatment. It works best for certain noncancerous tumors and a tumor that is only in 1 part of the brain.

Another type of radiation therapy that may be used for a CNS tumor is proton therapy. Proton therapy is a type of external-beam radiation therapy that uses protons rather than x-rays. Because proton therapy does not go completely through the body, it may cause less damage to healthy tissue. Since 2000, proton therapy has become more widely available in the United States.

Learn more about the basics of radiation therapy. Side effects from radiation therapy may include fatigue, mild skin reactions, upset stomach, headaches, and loose bowel movements. Most side effects go away soon after treatment is finished. However, in the long term, radiation therapy can sometimes cause problems with the growth and development of the child’s brain. Therefore, the doctor may choose to treat the tumor in another way.

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 is given by a medical oncologist, a doctor who specializes in treating a tumor with medication.

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). Chemotherapy may also be given directly into the spinal canal to treat tumor cells on the surface of the brain and spine. This procedure, called intrathecal chemotherapy, is still being researched in clinical trials and may not be available everywhere.

A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period time. A patient may receive 1 drug at a time or a combination of different drugs given at the same time.

Chemotherapy may be effective for many types of brain tumors. Depending on the tumor type, chemotherapy may be given immediately after a biopsy or surgery or after radiation therapy. In some instances, chemotherapy is used at the same time as radiation therapy.

The side effects of chemotherapy depend on the individual and the drug and 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 a CNS tumor 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 doctor know if your child is taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with cancer medications. Learn more about your child’s prescriptions by using searchable drug databases.

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 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 treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative care options.

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 care in a separate section of this website.

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 cancer will come back. While many remissions are permanent, it is important to talk with the 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 tumor does return. Learn more about coping with the fear of recurrence.

If the tumor returns 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 new cycle of testing will begin again to learn as much as possible about the recurrence. 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, chemotherapy, and radiation therapy, 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 this type of recurrent tumor. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

For a recurrent CNS tumor, the treatment options depend on 3 factors:

  • The type of tumor

  • Whether the tumor recurred where it originally started or in another part of the brain or body

  • The type of treatment given for the original tumor

Depending on your child’s situation, the doctor may recommend surgery, radiation therapy, chemotherapy, and/or a stem cell/bone marrow transplantation.

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 tumor recurrence.

If treatment does not work

Although treatment is successful for most 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 an advanced CNS tumor 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 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.

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 a CNS tumor. Use the menu to choose a different section to read in this guide.

Central Nervous System Tumors - Childhood - About Clinical Trials

Approved by the Cancer.Net Editorial Board, 01/2019

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. Use the menu to see other pages.

What are clinical trials?

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

Clinical trials are used for all types and stages of CNS tumors. Many focus on new treatments to learn if a new treatment is safe, effective, and possibly better than the existing treatments. 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 can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and the chance that the new treatment may not work. People are encouraged to talk with their health care team about the pros and cons of joining a specific study.

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

Deciding to join a clinical trial

People decide to participate in clinical trials for many reasons. For some 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 a way to contribute to the progress in treating a childhood CNS tumor. Even if they do not benefit directly from the clinical trial, their participation may benefit future children with a CNS tumor.

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

Sometimes people have concerns that, in a clinical trial, their child may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials in this way is rare overall and not done at all in childhood cancer research. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, parents and children must participate in a process known as informed consent. During informed consent, the doctor should:

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

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

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

Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep patients safe. You and the research team will carefully review these criteria together.

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

Finding a clinical trial

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

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.

PRE-ACT, Preparatory Education About Clinical Trials

In addition, you can find a free video-based educational program about cancer clinical trials in another section of this website.

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

Central Nervous System Tumors - Childhood - Latest Research

Approved by the Cancer.Net Editorial Board, 01/2019

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

Doctors are working to learn more about CNS tumors, ways to prevent them, how to best treat them, 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 best diagnostic and treatment options for your child.

  • New medications. Doctors are examining new types of drugs that may better control tumor growth. These include:

    • Targeted therapy. Recent research has found specific genes, proteins, and other factors unique to different types of CNS tumors. Treatments aimed at these factors, called targeted therapy, are now being studied. Targeted therapy is a treatment that targets the tumor’s specific genes, proteins, or the tissue environment that contributes to its growth and survival. This type of treatment blocks the growth and spread of tumor cells while limiting damage to healthy cells.

    • 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. Researchers are studying how well these drugs work and how safe they are for children with CNS tumors.

  • Improved imaging techniques. Imaging techniques are being developed and refined that help surgeons pinpoint the tumor’s location. This may help reduce or prevent tissue damage to the healthy parts of the brain during treatment.

    • Functional MRI (fMRI) is an imaging technique that identifies the parts of the brain that control speech, hearing, vision, touch, and movement. The specific locations of these functions are slightly different in every person, so fMRI allows surgeons to plan surgery around these areas.

    • Image-guided stereotaxis allows surgeons to visualize and operate on the brain using 3-dimensional outlines of the brain and the tumor. Along with specialized software, these images help guide the surgeon to the tumor. Many tumors that were once considered inoperable can now be removed with this technique.

    • Magnetic resonance spectroscopy (MRS) and positron emission tomography (PET) scans are also being used to examine tumor metabolic activity. Whether these techniques will improve a doctor’s ability to predict how a tumor will grow and spread is still being researched.

  • Improved methods of delivering radiation therapy. Doctors are experimenting with new techniques for delivering radiation therapy to certain types of tumors. These methods make detailed, 3-dimensional maps of the brain and tumor, so doctors can focus the radiation therapy on the tumor and avoid damage to the nearby healthy tissue. This can reduce a child’s exposure to radiation and lessen the long-term side effects.

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

Looking for More About the Latest Research?

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

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

Central Nervous System Tumors - Childhood - Coping with Treatment

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

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

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

Coping with physical side effects

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

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

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

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

Coping with emotional and social effects

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

You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your family’s needs.

Coping with financial effects

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

Caring for a child with a CNS tumor

Family members and friends often play an important role in taking care of a person with a CNS tumor. This is called being a caregiver. As a parent or guardian, you are the primary caregiver for your child. However, friends and family members can give your family valuable support, even if they live far away.

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

  • Providing short-term care for your child

  • Giving support and encouragement

  • Assisting with meals or household chores

  • Helping with insurance and billing issues

Learn more about caregiving.

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

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

  • Which side effects are most likely?

  • When are they likely to happen?

  • What can we do to prevent or relieve them?

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

Also, ask how much care your child may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan. Create a caregiving plan with this 1-page fact sheet that includes an action plan to help make caregiving a team effort. This free fact sheet is available as a PDF, so it is easy to print out.

Looking for More on How to Track Side Effects?

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

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

  • ASCO Answers Managing Pain: Get this 36-page booklet about the importance of pain relief that includes a pain tracking sheet to record how pain affects your child. The free booklet is available as a PDF, so it is easy to print out.

  • ASCO Answers Fact Sheets: Read 1-page fact sheets on diarrhea and rash that provide a tracking sheet to record the timing and severity of the side effect. These free fact sheets are available as a PDF, so it is easy to print out.

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

Central Nervous System Tumors - Childhood - Follow-Up Care

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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 a CNS tumor 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 CNS tumor 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. 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 stage of the tumor originally 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 “scan-xiety.” Learn more about how to cope with this type of stress.

Managing long-term and late side effects of a childhood CNS tumor

Sometimes, side effects may linger beyond the active treatment period. These are called long-term side-effects or late effects and may develop months or even years after diagnosis.

Late effects of childhood brain tumors include delayed development, learning problems, secondary cancers, hormone problems, delayed growth, and balance and vision problems. Children who had treatment for a brain tumor may also have problems with memory, thinking, and attention. They may also have an increased risk of anxiety and depression.

Based on the type of treatment your child received, the doctor will recommend certain examinations and tests to check for late effects. For example, radiation therapy to the head and spine can cause cognitive and endocrine (hormonal) symptoms over time. The severity of these symptoms vary greatly depending on your child’s age and how much radiation therapy he or she received. Similarly, the risks and potential side effects of surgery vary widely, depending on the location of the tumor and how it grew. The risks of chemotherapy and second cancers also strongly depend on the treatment, including the specific drugs and doses used. Your child’s doctor will recommend the necessary cancer screening tests.

Usually, follow-up tests include a CT or MRI of the brain and/or spine, hormone tests, and tests to check for how well the brain is working and how a child is growing and developing. 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 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 the child’s medical information. The doctor will help you create this. That way, as the child enters adulthood, he or she has 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 create a treatment summary to 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 family doctor or another health care professional. This decision depends on several factors, including the type and stage of the 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 his or her 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 him or her 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 his or her lifetime.

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

Central Nervous System Tumors - Childhood - Survivorship

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

What is survivorship?

The word “survivorship” means different things to different people, but it often describes living with, through, and beyond the diagnosis. In some ways, survivorship is one of the most complex aspects of your child's care because it is different for every child and his or her family.

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

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

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

  • Understanding the challenge your family is facing

  • Thinking through solutions

  • Asking for and allowing the support of others

  • Feeling comfortable with the course of action your family chooses

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

Changing role of caregivers

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

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

Healthy living after treatment

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

Children who have had a CNS tumor can 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 well, managing stress, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about making healthy lifestyle choices.

It is important that your child has recommended medical checkups and tests (see Follow-up Care) to take care of his or her health. 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 and productive as possible.

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

Looking for More Survivorship Resources?

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

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

  • ASCO Answers Cancer Survivorship Guide: Get this 44-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is available as a PDF, so it is easy to print out.

  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about childhood cancer survivorship.

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

Central Nervous System Tumors - Childhood - Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board, 01/2019

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?

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

  • Is the tumor cancerous?

  • What is the tumor’s grade? What does this mean?

  • What is the tumor’s molecular subtype (if applicable)? What does this mean?

  • 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 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 are the chances for success with the planned treatment?

  • Who is part of the treatment team, and what does each team member do?

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

  • How will this treatment affect my child’s daily life? Will he or she be able to attend 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 of medical care, who can help me?

  • What is the chance that the tumor will recur?

  • 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 surgery

  • What type of surgery will my child have?

  • How long will the operation take?

  • How long will he or she 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 effects of having this surgery?

Questions to ask about having radiation therapy or chemotherapy

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • 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 effects of having this treatment?

  • What can be done to 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 he or she need them?

  • 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 me/my child? To my family?

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

Central Nervous System Tumors - Childhood - Additional Resources

Approved by the Cancer.Net Editorial Board, 01/2019

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

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

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

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