You are here:Home1/Home2/The Medulloblastoma Journey
dulloblastoma (muh-dul-o-blas-TOE-muh) is a cancerous (malignant) brain tumor that starts in the lower back part of the brain, called the cerebellum. The cerebellum is involved in muscle coordination, balance and movement.
dulloblastoma tends to spread through cerebrospinal fluid (CSF) — the fluid that surrounds and protects your brain and spinal cord — to other areas around the brain and spinal cord. This tumor rarely spreads to other areas of the body.
dulloblastoma is a type of embryonal tumor — a tumor that starts in the fetal (embryonic) cells in the brain. Based on different types of gene mutations, there are at least four subtypes of dulloblastoma.
dulloblastoma Treatment Timeline
Symptoms may be related to the brain tumor itself or be due to the buildup of pressure within the brain. Symptoms are often progressive over weeks and months Please contact a medical professional to evaluate symptoms or emergency medical care when necessary.
Implementing Diagnostic Tools
Diagnostic tools are utilized to understand if a tumor is present and the cause of the symptoms. The most common initial diagnostic tools are eye exams, neurology exam, MRI or CT Scan. If further intervention is needed this will discussed at that time.
If mass is noticed during diagnostics (MRI or CT Scan) the next step may be surgery. A sample collection (tumor biopsy) will be recovered and sent to pathology to determine tumor diagnosis. Some tumor locations may not allow for surgery.
Surgery, tumor location and size and treatment side effects may present a need for rehabilitation. Posterior Fossa Syndrome(PFS), visual disturbances, weakness, neuropathy and balance/coordination issues. PT, OT and/or Speech Therapy may be necessary.
Spinal Fluid(CFS) + Pathology
During the diagnostic stage, CFS (Cerebrospinal fluid) and tumor biopsy are collected and sent to pathology to determine diagnosis. The pathology report will detail the classification of the tumor and will aid the medical team in defining treatment options.
Your Care Team
Your care team will evolve during treatment stages and may include; Neurosurgeon, Radiation Oncologist, Neurologist, Oncologist, Pscyhologists, Pathologist, Child Life specialists, Endocrinologist, Gastroenterologist, Nutritionist & Nurses/Nurse Practitioners.
Start of Treatment
Your medical team has developed the best course of care and provided you with a protocol report. A suggested start timeline will be determined as well as details of the protocol which will include treatment types (Radiation, Chemotherapy, Immunotherapy), length of each round, and specific drug regiments.
Continue Treatment + Monitoring
Protocols are based on your specific diagnosis, how your body responds to treatment, and minimizing side effects. Treatment can range from 1 year to ongoing. For tumors that were not fully resected during surgery, continued treatment may be necessary and regular monitoring is essential in determine future courses of care.
Surveillance + Monitoring
When the initial treatment plan (protocol) is completed and you are showing NED (no evidence of disease) a surveillance scheduled will be put in place that may include routine MRI’s, bloodwork, and specialty care followup. Post treatment follow care is based on your unique circumstance.
All brain tumors are different, in their location in the brain, their shape, and how they are removed and treated with drugs and/or radiation.
You know your child has a brain tumor, but you don’t know it is dulloblastoma for sure until weeks after surgery. Diagnosis starts with imaging (an MRI or CT scan), which tells your doctors and you that there is a mass in the brain and where it is located in order to remove the tumor (typically, very quickly). Diagnosis only starts after the tumor has been removed. Cellular and Molecular pathologists will look at a sample under a microscope and conduct genetic screening on the tissue. Your clinician will conduct a lumbar puncture to see if tumor tissue has migrated down the spine. Understanding these steps helps you better understand which specific type of dulloblastoma you are battling.