Medulloblastoma

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/Children’s Hospital Cancer 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 [LINK: Tab 3.1 Coping & Support] to help you, your child and your family get through this difficult time. Visit our Coping & Support [LINK: Tab 3.1 Coping & Support] 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.