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Medulloblastoma - Childhood - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

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

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

The brain and spinal column make up the central nervous system (CNS), where all vital functions are controlled, including thought, speech, and body strength. Medulloblastoma begins in granular cells in the cerebellum, which is the back of the brain. The cerebellum controls body movement and coordination.

Medulloblastoma occurs most commonly in children, and this section is about childhood medulloblastoma. Learn more about other types of CNS tumors in children and brain tumors in adults.

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

  • Cancer.Net Patient Education Videos: View short videos led by ASCO experts in childhood cancer 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.

Medulloblastoma - Childhood - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will find information about how many children learn they have medulloblastoma 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.

About 18% of childhood CNS tumors are medulloblastoma. The overall five-year survival rate is the percentage of people who survive at least five years after the tumor is detected excluding those who die from other diseases. For children with medulloblastoma, this depends on several factors, including the risk level for this disease and the child’s age when diagnosed. Overall, the five-year survival rate for children with average-risk disease is 70% to 80%. For children with high-risk disease, the rate is about 60% to 65%. If the child is an infant and the disease is localized, the survival rate is between 30% and 50%. 

Survival statistics should be interpreted with caution. These 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 medulloblastoma. Because the survival statistics are measured in five-year intervals, they may not represent advances made in the treatment or diagnosis of this cancer. Learn more about understanding statistics.

Statistics adapted from the Central Brain Tumor Registry of the United States and the American Brain Tumor Association.

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Medulloblastoma - Childhood - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will find out more about the factors that increase the chance of developing medulloblastoma. 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 don’t know what causes most childhood tumors, including medulloblastoma. Medulloblastoma is more common in boys than in girls. It occurs most often in the first eight years of life, with about half occurring in children younger than six years old.

In rare situations, children with nevoid basal cell carcinoma syndrome (NBCCS), a hereditary condition also known as Gorlin syndrome, have an increased risk of developing medulloblastoma. People with NBCCS are more likely to develop various tumors.

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

Medulloblastoma - Childhood - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

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

  • Headaches
  • Morning vomiting that worsens over time
  • Clumsiness
  • Problems with handwriting and other motor skills that worsen over time
  • Problems with vision or an eye turning inwards

If the tumor spreads to the spinal cord, it may cause the following symptoms:

  • Back pain
  • Inability to control the bowels and bladder
  • Difficulty walking

If you are concerned about one or more of the symptoms or signs on this list, please talk with your child’s doctor. Your doctor will ask how long and how often your child has been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.

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

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

Medulloblastoma - Childhood - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

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

Doctors use many tests to diagnose a tumor 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 types of tumors, a biopsy or removal of the tumor with surgery is the only way to make a definitive diagnosis. If a biopsy or surgery to remove the tumor is not possible or medically safe, the doctor may suggest other tests that will help make a diagnosis. Imaging tests may be used to find out whether the tumor has spread. This list describes options for diagnosing medulloblastoma, and not all tests listed will be used for every child. Your child’s doctor may consider these factors when choosing a diagnostic test:

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

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

Biopsy. A biopsy is the removal of a small amount of tissue for examination under a microscope. Other tests can suggest that a tumor is present, but looking at the tumor tissue removed during a biopsy, sometimes using surgery (see below), is the only way to make a definite diagnosis. The sample removed during the biopsy is analyzed by a pathologist. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease.

Surgical removal of the tumor. During surgery, a neurosurgeon removes as much of the tumor as possible for examination under a microscope (see the Treatment Options section). A neurosurgeon is a doctor who specializes in removing a tumor from the brain or spine with surgery. The sample removed during surgery is then analyzed by the pathologist.

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

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

Lumbar puncture (spinal tap). A lumbar puncture is a procedure in which a doctor uses a needle to take a sample of cerebral spinal fluid (CSF) to look for cancer cells, blood, or tumor markers. Tumor markers are substances found in higher than normal amounts in the blood, urine, or body tissues of people with certain kinds of cancer. CSF is the fluid that flows around the brain and the spinal cord. The child is given an anesthetic that numbs the lower back before the procedure. For patients with medulloblastoma, doctors usually perform a lumbar puncture after the tumor is removed through surgery (see the Treatment Options section).

After diagnostic tests are done, your child’s doctor will review all of the results with you. If the diagnosis is medulloblastoma, these results also help the doctor describe the tumor; this is called staging.

The next section helps explain the different stages for medulloblastoma. Use the menu on the side of your screen to select Stages, or you can select another section, to continue reading this guide.

Medulloblastoma - Childhood - Stages

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

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

Staging is a way of describing the size of a tumor, where it is located, if it is cancerous 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.

Medulloblastoma in children is classified as either standard (average) risk or high risk, depending on the following factors: the child’s age, how much of the tumor remains after surgery, and whether the tumor has spread.

Standard-risk tumor. The tumor is in the very back part of the brain and has not spread to other areas of the brain and spinal cord. Additionally, it is almost completely removed during surgery, meaning that less than 1.5 cubic centimeters (cm) of the tumor remains after surgery. However, the surgeon will usually prefer to remove all of the tumor if it can be completely removed without increasing the risk of severe side effects.

High-risk tumor. This type of tumor has either spread to other parts of the brain or the spine, or it has not spread but more than 1.5 cubic cm of tumor remains after surgery. Some tumors that first appear to be standard-risk tumors have high-risk molecular features and are treated as high-risk tumors.

Recurrent tumor. A recurrent tumor is a tumor that has come back after treatment. It may recur in the brain, spine, spinal fluid or, very rarely, elsewhere in the body. If there is a recurrence, the tumor may need to be staged again (called re-staging) 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 medulloblastoma. Use the menu on the side of your screen to select Treatment Options, or you can select another section, to continue reading this guide.

Medulloblastoma - Childhood - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

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

In general, brain 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 with cancer are treated as part of a clinical trial. Clinical trials are research studies that compare the 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 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 cancer is called a pediatric oncologist. In many cases, a team of doctors works with a child and the family to provide care; this is called a multidisciplinary team. Pediatric cancer centers often have extra support services for children and their families, such as child life specialists, nutritionists, physical and occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.

Treatment overview

Treatment options and recommendations depend on several factors, including the type and stage of the tumor, possible side effects, the family’s preferences, and the child’s overall health. Three types of treatment are typically used to treat medulloblastoma: surgery, radiation therapy, and chemotherapy. Sometimes, the treatments are used in combination. In some situations, stem cell or bone marrow transplantation may be recommended. Your child’s care plan may also include treatment for symptoms and side effects, an important part of cancer care. Take time to learn about your child’s treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your child’s doctor and what your child can expect while receiving the treatment. Learn more about making treatment decisions.

Descriptions of the common treatment options for medulloblastoma are listed below.

Surgery

Surgery is the removal of the tumor and surrounding tissue during an operation. Most commonly, it is the first treatment used for medulloblastoma. In addition to removing or reducing the size of the tumor, surgery can provide a tissue sample to diagnose the tumor, as explained in the Diagnosis section.

Surgery to the brain requires the removal of part of the skull, a procedure called a craniotomy. After the surgeon removes the tumor, the patient’s own bone will be used to cover the opening in the skull. There have been rapid advances in surgery for brain tumors. This includes the use of enhanced imaging machines to give surgeons more tools to plan and perform the surgery and cortical mapping, which is a technique that allows doctors to identify certain areas of the brain that control the senses, language, and motor skills.

Some tumors cannot be removed by surgery because of their location; these tumors are called inoperable. In these situations, the doctor will recommend other treatment options. If the tumor is cancerous, even if the cancer cannot be cured, its removal can relieve symptoms caused by the tumor pressing on the brain.

Side effects from surgery for medulloblastoma can vary. Parents are encouraged to talk about possible short-term and long-term side effects with their child’s doctor before surgery. Occasionally the surgeon will place a plastic tube called a shunt to move the fluid made inside the brain to the abdomen so that the fluid does not build up in the brain and cause problems. In most instances, the placement of a shunt is safe and most children do not have any problems from the procedure. Patients and their parents are encouraged to talk with the doctor about the possible side effects from placing a shunt.

Learn more about surgery.

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 (schedule) usually consists of a specific number of treatments given over a set period of time.

A type of radiation therapy that may be used for medulloblastoma is proton therapy. Proton therapy is a type of external-beam radiation therapy that uses protons rather than x-rays. At high energy, protons can destroy tumor cells. Proton therapy is becoming more widely used in the United States.

Because radiation therapy can sometimes interfere with the normal growth and development of a child’s brain and spine, the doctor may choose to treat the tumor in another way. If radiation therapy is recommended, the approach will be based on the child’s age. For children older than three, radiation therapy includes a moderate dose to the entire brain and spine, followed by a higher dose aimed directly at the tumor and the surrounding area or the back part of the brain. For children younger than three, radiation therapy may be limited to the back part of the brain or the tumor and the surrounding area after surgery and chemotherapy (see below).

Short term side effects from radiation therapy may include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most of these side effects go away soon after treatment is finished. Long-term side effects of radiation therapy may include problems with growth, hormone deficiencies, and problems with learning, especially higher education.

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 pediatric oncologist or a medical oncologist, a doctor who specializes in treating a tumor with medication.

Systemic chemotherapy is delivered through the bloodstream to reach tumor cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally). It can also be give by injection into a muscle or directly into the cerebrospinal fluid, which is fluid that circulates around the brain and spinal cord. A chemotherapy regime (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.

Researchers are studying ways to use chemotherapy before, during, or after radiation therapy, as the two types of treatment may work better to treat the tumor when combined. High-dose chemotherapy may be used before or instead of radiation therapy for children younger than three to four years old. Several cycles of high-dose chemotherapy may be used before or after radiation therapy in children older than three to four years old. High-dose chemotherapy works best when there is little tumor left after surgery.

The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away once treatment is finished.

Learn more about chemotherapy and preparing for treatment. The medications used to treat cancer are continually being evaluated. Talking with the 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.

Stem cell transplantation/bone marrow transplantation

A stem cell/bone marrow transplant may be used for children with recurrent medulloblastoma. A stem cell transplant is a medical procedure in which bone marrow that contains tumor cells is replaced by highly specialized cells, called hematopoietic stem cells, that develop into healthy bone marrow. Hematopoietic stem cells are blood-forming cells found both in the bloodstream and in the bone marrow. Today, this procedure is more commonly called a stem cell transplant, rather than bone marrow transplant, because it is the stem cells in the blood that are typically being transplanted, not the actual bone marrow tissue.

Before recommending transplantation, doctors will talk with the patient about the risks of this treatment and consider several other factors, such as the type of tumor, results of any previous treatment, and patient’s age and general health.

There are two types of stem cell transplantation depending on the source of the replacement blood stem cells: allogeneic (ALLO) and autologous (AUTO). ALLO uses donated stem cells, while AUTO uses the patient’s own stem cells. Only AUTO transplantation is used to treat medulloblastoma.

The goal is to destroy all of the tumor cells in the marrow, blood, and other parts of the body using high doses of chemotherapy and/or radiation therapy and then allow replacement blood stem cells to create healthy bone marrow. Learn more about stem cell and bone marrow transplantation.

Getting care for symptoms and side effects

A brain tumor and its treatment often causes 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 disease, 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 child’s specific treatment plan and supportive care options. And during and after treatment, be sure to tell your child’s doctor or another health care team member if your child is experiencing a problem so it is addressed as quickly as possible. Learn more about palliative care.

Remission and the chance of recurrence

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

A remission can be temporary or permanent. This uncertainty leads to many 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 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 surgery, radiation therapy, or chemotherapy, but they may be used in a different combination or given at a different pace. Your child’s doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent tumor.

Treatment of recurrent medulloblastoma depends on two factors:

  • Whether the tumor recurred in the place where it began or in another part of the brain
  • The type of treatment the child received for the original tumor

Depending on each child’s situation, the doctor may recommend surgery, radiation therapy, chemotherapy, and/or stem cell/bone marrow transplantation. High-dose chemotherapy may be a part of treatment for children with recurrent medulloblastoma. Salvage chemotherapy refers to the use of chemotherapy for a patient who experiences a recurrence of cancer following initial treatment, in the hope of providing a cure or prolonging life.

If your child is diagnosed with a recurrence, you and your family may experience emotions such as disbelief or fear. You are encouraged to talk with your child’s health care team about these feelings and ask about support services to help your family cope. Learn more about dealing with a recurrence.

If treatment fails

Although treatment is successful for the majority of children with a brain tumor, sometimes it is not. If a child’s tumor cannot be cured or controlled, this is called advanced or terminal cancer. This diagnosis is stressful, and it may be difficult to discuss. However, it is important to have open and honest conversations with your child’s doctor and health care team to express your family’s feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families.

Parents or guardians are encouraged to think about where the child would be most comfortable: at home, in a home-like setting elsewhere, in the hospital, or in a hospice environment. Hospice care is a type of palliative care for people who are expected to live less than six months. It is designed to provide the best possible quality of life for people who are near the end of life. Nursing care and special equipment can make staying at home a workable alternative for many families. Some children may be happier if they can arrange to attend school part-time or keep up other activities and social connections. The child’s health care team can help parents or guardians decide on an appropriate level of activity. Making sure a child is physically comfortable and free from pain is extremely important as part of end-of-life care. Learn more about caring for a terminally ill child and advanced care planning.

The death of a child is an enormous tragedy, and families may need support to help them cope with the loss. Pediatric cancer centers often have professional staff and support groups to help with the process of grieving. Learn more on grieving the loss of a child.

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

Medulloblastoma - Childhood - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

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 medulloblastoma. To make scientific advances, doctors create research studies involving volunteers, called clinical trials.

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

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

People decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, people are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other people volunteer for clinical trials because they know that these studies are the only way to make progress in treating medulloblastoma. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with medulloblastoma.

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.

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

For specific topics being studied for medulloblastoma, 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 people participating in a clinical trial talk with the doctor and researchers about who will be providing treatment and care during the clinical trial, after the clinical trial ends, and/or if they choose to leave the clinical trial before it ends.

Cancer.Net offers a lot of information about clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of tumor.

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

Medulloblastoma - Childhood - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

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

New staging systems. In addition to the staging criteria currently used (see Stages), newer factors are being examined to help stage medulloblastoma in order to choose treatment. For example, tumors with certain features are being treated as high-risk tumors in some clinical trials. This includes features called anaplastic and changes to certain genes, such as MYC and MYCN.

Molecular testing of the tumor. Researchers are looking at laboratory tests for tumor samples to identify specific genes, proteins, and other factors unique to medulloblastoma. It is now known that medulloblastoma is made up of 4 subtypes – WNT, SHH, Group 3, and Group 4. Results from these studies may help develop specific therapy for each type of medulloblastoma and find new drugs that target factors that help medulloblastoma grow and spread. Such drugs are being tested for patients whose tumors recur after initial treatment. These molecular features are also being looked at to predict how well treatment will work. Future studies will likely base patients’ treatment on each tumor’s specific molecular features. Learn more about this approach, called targeted therapy.  

Improved methods of imaging and surgery. Imaging techniques have been developed that help surgeons pinpoint the tumor’s location, which may reduce or prevent 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 each person, so fMRI allows surgeons to plan surgery around these areas.
  • Image-guided stereotaxis allows surgeons to visualize and operate on the brain using three-dimensional outlines of the brain and the tumor. Along with specialized software, these images help guide the surgeon to the tumor. Some tumors that were once considered inoperable can now be removed by using this technique.

Improved methods of delivering radiation treatment. Conformal radiation therapy is a way to deliver high doses of radiation therapy more directly to a tumor and avoid healthy tissue. This technique produces detailed three-dimensional maps of the brain and tumor, so doctors know exactly where to deliver the radiation therapy.

Combination of therapies. Other areas of research include studies that examine the safety of reducing the doses of radiation therapy for children with a standard-risk tumor by using new approaches to chemotherapy. Other studies in infants and older children with high-risk tumors focus on new drugs and combinations of radiation therapy and chemotherapy to slow or stop tumor growth.

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

Looking for More About the Latest Research?

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

  • To find clinical trials specific to your child’s diagnosis, talk with your child’s doctor or search online clinical trial databases now.
  • Visit ASCO’s CancerProgress.Net website to learn more about the historical pace of research for childhood cancer. 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.

Medulloblastoma - Childhood - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

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

Common side effects from each treatment option for medulloblastoma 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 grade, the length and dosage of treatment(s), and your child’s overall health.

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

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

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

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

Medulloblastoma - Childhood - After Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will read about your child’s medical care after cancer 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 medulloblastoma 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 a CNS tumor, including medulloblastoma, should have life-long, follow-up care.

Based on the type of treatment your child received, the doctor will determine what examinations and tests are need to check for long-term side effects, such as cognitive (thought-process) and hormonal symptoms caused by radiation therapy to the brain or spinal cord, side effects caused by surgery, and the possibility of secondary cancers. 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 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.

Medulloblastoma - Childhood - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

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?
  • Is the tumor cancerous?
  • What is the exact location?
  • What is the stage or risk group of the tumor? What does this mean?
  • Can you explain my child’s pathology report (laboratory test results) to me?
  • What is your familiarity with my child’s tumor type and its treatment?
  • What treatment options are available to my child?
  • What clinical trials are open to 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?
  • 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 each treatment, both in the short term and the long term?
  • How will this treatment affect my child’s daily life? Will he or she be able to go to school and perform his or her usual activities?
  • Could this treatment affect my child’s ability to become pregnant or have children in the future? If so, should I talk with a fertility specialist before treatment begins?
  • If I’m worried about managing the costs related to my child’s 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 me? To my family?
  • Whom should I call for questions or problems?

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

Medulloblastoma - Childhood - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 05/2014

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about medical care and treatment. This is the final page of Cancer.Net’s Guide to Childhood Medulloblastoma. 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 a CNS tumor, both for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond. Here are a few sections that may get you started in exploring the rest of Cancer.Net:

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

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

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

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

- 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 medulloblastoma.

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

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