You've Received a Diagnosis of Medulloblastoma. What Next?

When you or your child is diagnosed with medulloblastoma, there are a few steps that can provide direction and help with treatment options. Often they can provide clarity both to the patient and also to the researcher charged with your child’s care. Although this website is based on personal experience and data accumulated by The Cure Starts Now Foundation, your doctor should always serve as your guide in this process and the steps below should be discussed with him or her in advance.

1. See if your hospital is a member of prominent brain cancer consortiums such as the Pediatric Brain Tumor Consortium, CONNECT, COG, or PNOC

Not only is this an indication of expertise in medulloblastoma, but it will link you to the leading institutions with medulloblastoma protocols.

It is important to receive care at a hospital that regularly treats medulloblastoma patients. Medulloblastoma acts very differently than other tumors and that expertise can greatly improve the quality of life and care for your child.

2. Ask for a Second Opinion

This can be done either directly from your current treating hospital or through a peer hospital. This is important because each medulloblastoma can appear different on initial scans. It is especially important if:

  • The Medulloblastoma looks atypical on an MRI
  • If the patient is a child
  • If you are unsure about your hospital's expertise in medulloblastoma

3. Always Thoroughly Discuss Radiation and Timing

Often many drugs can be taken with radiation. Even if protocols may have issues with radiation, you may find that the drugs can be taken off trial.

4. Get Educated on Trials

Most likely your child may enroll in several protocols for treatment. View current active trials to learn about options. Ask for background data on trials such as adult data, prior pediatric trials, etc.

5. Talk With Other Parents You Can Trust

Don’t discount those parents that may have even lost a child. You’ll find that groups such as the Medulloblastoma Collaborative have parents that are willing to help, connect you to experts and are dedicated to creating new treatments for all children. They are often the driving forces in the medulloblastoma community.

Contact us to be connected to a parent who is willing to provide one-on-one support.