Scan #4 | 14 months since dx
On November 6th, we encountered our first complicated post-resection scan. A new 3mm spot, believed to be noncancerous, was identified and is suspected to be small hemorrhage or a cavernoma (a cluster of abnormal blood vessels) that can occur as a side effect of radiation. If it grows it will be need to surgically removed, and so Juliette will be scanned again in December to check on the size of it.
Last week's scan also served as the impetus for a sobering conversation with our oncologist. MRI scans surface anomalies to radiologists, but interpreting those anomalies can be quite subjective. Scans are reviewed by a random member of the radiology team based on who's working and available when Juliette completes her MRI. In each of our scans this year the attending radiologist has identified a "hyperintensity" in the tumor cavity that has been attributed to post-surgical / post-treatment related changes - said another way, things are expected to look different after surgically resecting a tumor and administering six weeks of radiation.
In our most recent scan the attending radiologist felt that the hyperintensity likely represents residual tumor. "Residual tumor" is among the worst phrases in the brain cancer community. Why? Because recurrences are more common when there is residual tumor, and recurrences are inversely correlated with survival.
The good news is the size of the hyperintensity has been stable for a year. The bad news is there's no definite way to determine if it's residual tumor or just post-surgical / post-treatment related changes. It's difficult to grapple with this level of uncertainty as we approach the critical 1-2 year window when recurrences are statistically most likely to occur.
Next Steps:
Juliette's brain and spine will be scanned in December.
We will seek a second opinion to review all of the images.
We will meet with our neurosurgeon to discuss the feasibility of resecting the hyperintensity.
what we’re watching and doing
Ependymoma Research Foundation has officially funded TWO research proposals.
Stanford Medicine has reported some encouraging results treating an even more devastating pediatric brain tumor called Diffuse Midline Glioma, hopefully this success can be repeatable and extended to ependymoma: Cell therapy fights lethal childhood brain cancer in Stanford Medicine trial.
Stay tuned for our 2025 fundraising initiatives!
