The Medulloblastoma Journey

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dulloblastoma

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

OnSet
ASAP
Hours
Days
Months
Years
Ongoing

Presenting Symptoms

ONSET

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

ONSET
ASAP

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.

Surgery

HOURS
DAYS

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.

Rehabilitation

DAYS
MONTHS
YEARS
ONGOING

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

DAYS
MONTHS

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

HOURS
DAYS
MONTHS
YEARS
ONGOING

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

DAYS
MONTHS
YEARS

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

YEARS
ONGOING

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

ONGOING

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.

Disease.Anatomy.Symptoms

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.

Disease Overview
What is dulloblastoma and who gets it?

Anatomy + Clinical Significance
What are the parts of the central nervous system, what
do they do, and what does the tumor’s location mean for treatment and patient care?

Presenting Symptoms
What are the presenting symptoms leading up to a diagnosis? How do symptoms affect your treatment plan timeline?

pinpointing-the-cause-of-a-brain-abscess-will-lead-to-more-effective-treatment

Diagnosis.Classification.Pathology

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.

Diagnosic Tools
Tools-There are 5 most common pre diagnostic tools used to determine if a
mass/tumor is causing presenting symptoms.

Classification
dulloblastoma in children is classified as either standard (average) risk or
high risk and can be divided into four subdiagnosis_classificationgroups.

Pathology
tumor features; such as the sizeUnderstanding-pathology and shape to classify dulloblastoma tumors and determine metastasis, or spread of disease

Treatment.Protocols.Side Effects.Specialty Care

You have received a dulloblastoma diagnosis and now it is time to understand treatment options.

Treatment
You and your medical team will determine the best treatment options. There are 5 most commonly used treatments.

Protocols
If your child receives standard treatment, you will be given a written copy of the treatment plan, called a protocol. Protocols are based on your diagnosis- risk classification, group + resection (full or partial), age and treating institution.

Side Effects/Specialty Care:
Treatment is the first line of defense for combatting brain cancer; however there are side effects associated with the different lines of defense. We will detail the most common side effects to dulloblastoma patients.

Curemedullo Is A Division Of The Carson Leslie Foundation ©2021 All rights reserved. The Carson Leslie Foundation (CLF) is a registered 501(c)(3) charity organization. Please note that cureMEdullo provides this information for the benefit of the medulloblastoma and childhood cancer community. cureMEdullo and CLF are not medical providers or a health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder.