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
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 resources and support services.
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 established 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 or contact us.