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Medulloblastoma

  • We understand how scary and overwhelming a diagnosis of a brain tumor can be. Right now, you probably have a lot of questions. What is the very best treatment for my child? What do we do next? We’ve provided answers to many questions like these in the following pages, and our expert pediatric subspecialists can explain your child’s condition fully when you meet with us.

    Here’s what you need to know about this kind of brain tumor.

    • Medulloblastomas are tumors located in the cerebellum, the part of the brain that controls balance and other complex motor functions.
    • They grow most often in the central part of the cerebellum, and less frequently in the outer parts of the cerebellum.
    • Medulloblastoma is the most common malignant (cancerous) central nervous system tumor in children. It accounts for 15 to 20 percent of all pediatric brain tumors.
    • Medulloblastomas occur most commonly in children between ages of 3 and 8 but can be seen in children and adults of any age.
    • There are about 500 cases of medulloblastoma diagnosed each year in the United States.
    • The outcome for children with medulloblastoma has improved dramatically over the past several decades. However, the outcomes in infants remain poor.


    How Dana-Farber/Boston Children’s Cancer and Blood Disorders Center approaches medulloblastoma

    Children diagnosed with medulloblastoma are treated through the Medulloblastoma Treatment Program at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, New England’s largest and most active pediatric brain tumor treatment center.

    Our team provides a unique degree of specialization across many disciplines, which translates into advanced treatment options for patients with medulloblastoma and other brain tumors. We offer:

    • technological advances such as the intra-operative MRI, which allows our pediatric neurosurgeons to obtain an MRI immediately in the operating room before the operation is complete and remove as much of the tumor as possible
    • expert diagnosis and consultation by neuropathologists who use advanced molecular diagnostic testing
    • access to unique Phase I clinical trials, from our own investigators, the Children’s Oncology Group and the Pediatric Oncology Experimental Therapeutics Consortium

    As you read further, you’ll find general information about medulloblastoma. If you would like to view summary information about brain tumors first, see the overview on brain tumors.

  • We understand that you may have a lot of questions if your child has been diagnosed with medulloblastoma.

    •    What exactly is it?
    •    What are potential complications in my child’s case?
    •    What are the treatments?
    •    What are possible side effects from treatment?
    •    How will it affect my child long term?

    We’ve tried to provide some answers to those questions here, and when you meet with our experts, we can explain your child’s condition and treatment options fully.

    What is medulloblastoma?

    Medulloblastoma is a type of brain tumor that most commonly occurs in the cerebellum, the part of the brain that controls balance and other complex motor functions. It’s the most common malignant central nervous system tumor in children.

    How are medulloblastomas classified?
    Successfully treating your child’s medulloblastoma depends largely on whether the tumor can be completely removed through surgery and whether the tumor has spread to other parts of the brain or spinal cord. Typically, post-surgery medulloblastomas are divided into three risk assessment groups:

    infants (children under age 3)
    standard risk (no evidence of disease with a complete removal of the tumor)
    high risk (evidence of incomplete removal or tumor spread elsewhere in the nervous system)

    What causes medulloblastoma?

    As a parent, you undoubtedly want to know what may have caused your child’s tumor. In most cases, the cause of medulloblastoma is not known. In some cases, medulloblastoma is associated with certain inherited diseases, including:

    • Li-Fraumeni syndrome
    • Nevoid basal cell carcinoma syndrome (Gorlin syndrome)
    • Turcot syndrome?

    It’s important to understand that these and other brain tumors most often occur with no known cause. There’s nothing that you could have done or avoided doing that would have prevented the tumor from developing.

    What are the symptoms of medulloblastoma?

    Brain tumors can cause a variety of symptoms in children based on their age and the location of the tumor. Keep in mind that the symptoms of a brain tumor may resemble other more common conditions or medical problems. Always consult your child's physician for a diagnosis.

    While your child may experience symptoms differently, common symptoms of medulloblastoma include:

    • headache (generally upon awakening in the morning)
    • nausea and vomiting
    • fatigue
    • lethargy
    • imbalance and lack of coordination
    • problems with motor skills (such as writing)
    • neck tilt or double vision
    • changes in personality or behavior
    • seizures

    Rarely, medulloblastoma can spread into the central nervous system or the spinal canal, and your child may experience:

    • loss of strength in the lower extremities
    • back pain
    • bowl and bladder control issues
    • difficulty walking

    Questions to ask your doctor

    You and your family are key players in your child’s medical care. It’s important that you share your observations and ideas with your child’s health care provider and that you understand your doctor’s recommendations.? ?If your child is has been diagnosed with medulloblastoma, you probably have a lot on your mind. So it’s often helpful to write questions down. Some of the questions you may want to ask include:

    What does a diagnosis of medulloblastoma mean for my child?
    How will you manage my child’s symptoms?
    What are my child’s treatment options?
    What are the possible short and long-term complications of treatment?
    What is the long-term outlook for my child?
    How likely is it that the tumor will come back?
    What services are available to help my child and my family cope?

     

    FAQ

    Q: Where will my child be treated?
    A: Children treated through Dana-Farber/Boston Children’s Cancer and Blood Disorders Center receive outpatient care at the Jimmy Fund Clinic on the third floor of the Dana-Farber Cancer Institute. If your child needs to be admitted to the hospital, he will stay at Children’s Hospital Boston on the ninth floor of the Berthiaume Building.

    Q: What services are available to help my child and my family cope?
    A: We offer a variety of support services to help you, your child and your family get through this difficult time. Visit our Patient & Family Support Services page for more information.

    Q: What is the expected outcome after treatment?
    A: The outcome for children with medulloblastoma has improved dramatically over the past several decades. With intensive treatment, including chemotherapy, radiation and/or surgery, many children are cured of the disease.

    However, the outcomes in infants remain poor and many studies are underway to evaluate new treatment strategies in infants. Some include aggressive chemotherapy, including high-dose chemotherapy and stem cell transplant, and localized radiation therapy to minimize the harmful effects of radiation therapy on the developing brain.

    Q: What kind of supportive or palliative care is available for my child?
    A: When necessary, our Pediatric Advanced Care Team (PACT) is available to provide supportive treatments intended to optimize the quality of life and promote healing and comfort for children with life-threatening illness. In addition, PACT can provide psychosocial support and help arrange end-of-life care when necessary.

  • The first step in treating your child is forming an accurate and complete diagnosis.

    How is medulloblastoma diagnosed?

    Your child’s physician may order a number of different tests to determine the type and location of the tumor. In addition to a physical exam, a medical history and neurological exam, diagnostic procedures for medulloblastoma may include:

    magnetic resonance imaging (MRI) - a diagnostic procedure that produce detailed images of structures within the brain and spine. An MRI scan of the brain after surgery will determine how much of the tumor was removed surgically.

    • surgical resection - after surgical removal of the tumor a tissue sample will be taken and analyzed to confirm the diagnosis. While an MRI may indicate a possible medulloblastoma, only a tissue sample can confirm the diagnosis.

    Your child’s physician will need to perform a lumbar puncture, or spinal tap, if your child has medulloblastoma. However, this will be performed at a time after the initial surgery is completed. In addition, there may be other diagnostic tests that your doctor will discuss with you.

    After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to discuss the results and outline the best treatment options.

     

  • We know how stressful a diagnosis of medulloblastoma can be, both for your child and for your whole family. That's why our physicians are focused on family-centered care: From your first visit, you'll work with a team of professionals who are committed to supporting all of your family's physical and psychosocial needs. We'll work with you to create a care plan that's best for your child.

    What treatments are available?

    If your child has been diagnosed with medulloblastoma, you will naturally be eager to know how your child's physician will treat the tumor. Your child's physician will determine a specific course of treatment for medulloblastoma based on several factors, including:

    • your child's age, overall health and medical history
    • type, location, and size of the tumor
    • extent of the disease
    • your child's tolerance for specific medications, procedures or therapies
    • how your child's doctors expects the disease to behave?

    There are a number of treatments we may recommend. Some of them help to treat the tumor while others are intended to address complications of the disease or side effects of the treatment. Treatment may include (alone or in combination):

    Endoscopic third ventriculostomy (ETV) or ventriculo-peritoneal shunt (VP shunt): A tumor in the brain can cause blockage of cerebral spinal fluid, the fluid that bathes the brain and spinal cord. If this occurs, our pediatric neurosurgeons may perform a procedure to relieve symptoms of hydrocephalus, the build-up of fluid, which causes increased pressure within the skull.

    In an endoscopic third ventriculostomy, surgeons create a small hole that allows fluid to flow around the blockage and into the spinal column. About 90 percent of children with symptoms of hydrocephalus will undergo this procedure.

    In some cases, children may have an alternative procedure in which a tube is installed to drain excess fluid into the abdomen (VP shunt).

    Surgery: The goals of surgery are to relieve hydrocephalus (fluid build-up in the skull) and to remove the tumor. Research has shown that the more completely the tumor is removed, the better the outcome may be. Therefore, your child's surgeon will remove as much of the tumor as safely as possible, while avoiding neurological side effects.

    Typically, post-surgery medulloblastomas are divided into three risk assessment groups:

    • infants (children under age 3)
    • standard risk (no evidence of disease with a complete removal of the tumor)
    • high risk (evidence of incomplete removal or tumor spread elsewhere in the nervous system)


    Risk assessment may also be determined based on the subtype of the tumor, based on the pathologic diagnosis. Your child's physician will discuss the implications of the specific subtype of your child's tumor.

    Radiation therapy: Radiation therapy uses high-energy waves from a specialized machine to damage or kill cancer cells and shrink tumors. Your child's physician will work with pediatric radiation oncologists to determine the optimal dose of radiation that will effectively treat the tumor while avoiding side effects as much as possible.

    Chemotherapy is injected into the bloodstream via IV and travels throughout the body to kill cancer cells. Different groups of chemotherapy drugs work in different ways to fight cancer cells and shrink tumors.

    How is chemotherapy given?

    Chemotherapy is a group of drugs that interfere with the cancer cell's ability to grow. Your child may receive chemotherapy:

    • orally, as a pill to swallow
    • intramuscularly, as an injection into the muscle or fat tissue
    • intravenously, as a direct injection into the bloodstream; also called IV
    • intrathecally, as a direct injection into the spinal column through a needle


    Does chemotherapy cause side effects?

    While chemotherapy can be quite effective in treating certain cancers, the medications cannot distinguish healthy cells from cancer cells. As a result, there can be side effects during treatment. Each chemotherapy drug has a different side effect profile and your child's physician will discuss these with you. Your child's care team will also work to manage or prevent side effects when possible.

    What is the treatment for medulloblastoma after surgery?

    We will recommend additional treatment after surgery in order to kill remaining cancer cells and improve the likelihood of cure. Depending on the type and location of the tumor and the results of surgery, treatment after surgery may include:

    • radiation to the brain and spine
    • chemotherapy


    What issues might arise after surgery?

    After the operation, your child may have difficulties with coordination, weakness in his extremities and problems with balance. These typically resolve over a course of several weeks. Our physical and occupational therapists will work with your child to treat these issues.

    "Posterior fossa mutism" is a condition that may occur after surgery. Within 24 hours, the child develops an inability to speak, has problems with balance and has difficulty with swallowing. The condition may range from mild to severe. The cause of this condition is not entirely known but it is unique to this area of the brain.

    In about 15 percent of the children diagnosed with medulloblastoma, hydrocephalus may develop, requiring a procedure to drain spinal fluid. These procedures are performed by our pediatric neurosurgeons.

    What is the expected outcome after treatment?

    The prognosis (chance of recovery) and treatment options depend on:

    • the age of your child at the time of diagnosis
    • the location of the tumor
    • the amount of tumor remaining after surgery
    • whether the cancer has spread to other parts of the central nervous system (brain and spinal cord), or to other parts of the body, such as the bones


    The outcome for children with medulloblastoma has improved dramatically over the past several decades.

    The outcomes in infants remain poor and many studies are underway to evaluate new treatment strategies in infants. Some include aggressive chemotherapy, including high-dose chemotherapy and stem cell transplant, and localized radiation therapy to minimize the harmful effects of radiation therapy on the developing brain.

    Chemotherapy and radiation therapy can cause damage to healthy tissues. As a result, your child may experience long-term side effects after treatment for medulloblastoma. Possible long-term effects of treatment may include:

    • hearing loss
    • loss of height
    • endocrine dysfunction (hormonal problems)
    • secondary tumors
    • secondary leukemias


    Children treated for a medulloblastoma should visit a survivorship clinic every year:

    • to manage disease complications
    • to be screened for early recurrence of tumor
    • to manage late effects of treatment


    For follow-up, your child will have yearly evaluations by our multidisciplinary team of pediatric sub-specialists. Follow-up visits may include:

    • detailed physical and neurologic examinations
    • MRI scans of the brain and spine
    • audiologic evaluations
    • endocrine assessments
    • neuropsychologic testing

    Coping and support

    In addition to providing medical care, we strive to also meet all of your family's emotional and quality-of-life needs. We know that unfamiliar places, especially hospitals, often create anxiety and fear for a child. We also know this isn't an easy time or task for parents, who have their own fears and concerns about the situation. Our family support services will help address many of your needs and concerns. Read about our patient and family support services.

    Long-term follow-up

    Many children and adolescents diagnosed with medulloblastoma will survive into adulthood. However, survivors may face physical, psychological, social and intellectual challenges related to their treatment and will require ongoing assessment and specialized care.

    To address the needs of this growing community of brain tumor survivors, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center provides brain tumor survivorship support through the Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic.

    Today, more than 900 pediatric brain tumor survivors of all ages are followed by the Outcomes Clinic, a multi-disciplinary program designed to address long-term health and social issues for families and survivors of childhood brain tumors.

    As a result of treatment, children may experience changes in intellectual and motor function. Among several programs addressing these needs are the School Liaison and Back to School Programs, which provide individualized services to ease children's return to school and maximize their ability to learn.

    In addition to providing thorough and compassionate care, our Outcomes Clinic specialists conduct innovative survivorship research and provide continuing education for staff, patients and families.

    Learn more about our survivorship clinic.

  • What is the latest research on medulloblastoma?

    We are conducting numerous research studies that will help clinicians better understand and treat medulloblastoma. Recently, scientists have discovered the molecular characteristics of medulloblastomas, identifying several subtypes, which may be correlated with prognosis. In the future, these discoveries may help researchers to develop better therapies. For more information on current research, see the Medulloblastoma Program page.

    Clinical trials

    For many children with brain tumors or other rare or hard-to-treat conditions, clinical trials provide new options.

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