Life After a Brain Tumor Diagnosis

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When a child finishes treatment for a brain tumor, the journey has only begun. It’s important for parents, caregivers, and survivors to plan for the months and years ahead.


Progression and Recurrence

During and after treatment for a child’s brain tumor, doctors will continue to monitor the tumor. There are many different words doctors use to describe changes they may find.

After a child is diagnosed with a brain tumor, they need to regularly get tests and scans to help doctors monitor the tumor’s response to treatment. The test results help doctors recommend whether different or more treatments are needed.

When your child’s doctor discusses the test results with you, there are different words they may use to describe what’s happening with your child’s tumor.

Progression or recurrence are two words you may hear your child’s doctor use. Progression means that the tumor has grown or there may be new brain lesions present. Brain lesions are areas of damaged brain tissue. Depending on the treatment your child received, it may be difficult for the doctor to determine if the changes are actually tumor progression, or if there is another cause for the changes.

After your child’s treatment stops, doctors will need to continue to monitor the brain tumor. Sometimes, a tumor comes back after treatment. This is called recurrence. If a tumor does return, doctors will often use tests and scans that are similar to what your child got when they were first diagnosed to understand the extent of the recurrence and plan for next steps.

Two other terms you may hear are residual disease and no evidence of disease.  Residual disease or residual tumor can mean that some of your child’s tumor is still present. No evidence of disease means that the tumor appears to be gone.

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