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Not sure how unique our case is. 5 years ago our 10 year old daughter suffered a seizure and an MRI revealed a small mass in her left temporal lobe. Right away the doctor suspected a DNET or ganglioglioma. Our daughter has been on Keppra to control seizures. After 5 years (our daughter is 15 now) of regular MRIs to watch it she has had only 1 seizure and the MRI show very slow changes. We have not biopsied yet and have been told by the neurosurgeon that it could not be completely resected. For the "unique" part of this, sadly, we lost our younger daughter to ATRT 4 years ago at age 6. My questions are:
-In your opinion could there be some hereditary component here ?I'm familiar with the I1N1 but not sure how/if this plays in.
-at what point would you suggest a biopsy?
Thank you
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Replies to "Not sure how unique our case is. 5 years ago our 10 year old daughter suffered..."
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We are sad to hear your very unfortunate news. Some brain tumors like ATRT do have a genetic component that we think drives the tumor to grow and cause problems. These “drivers” are much more common in high grade brain tumors, like ATRT, DIPG, etc. In our opinion it would be hard to imagine a hereditary connection between a DNET and ATRT, however, as our molecular understanding of these tumors grow, we may uncover a connection in the future.
I (Dr. Daniels) would need to see the scans to determine the best course of action for your older daughter’s case. If you would like to send the scans to me for review, please send a message to Alex Merkel via the connect platform (posting this response). I cannot comment on her specific case via the internet.