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An overview of treatment options for children with low grade gliomas is discussed. The webinar features Mayo Clinic Pediatric Neurosurgeon, David Daniels, M.D., and Mayo Clinic Pediatric Neurologist, Gesina Keating, M.D.. Both physicians discuss diagnosis and treatment options including: observation, surgery and chemotherapy. Follow-up care for children with low grade gliomas is also be discussed including: Pilocytic Astrocytomas, Gangliogliomas, DNETs and other low grade brain tumors. After the presentation Dr. Daniels and Dr. Keating answered questions.
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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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My daughter was diagnosed with a JPA located at the base of her cerebellum in 2013. After three missed diagnosis from our family physician, it took our eye doctor who was able to see that something was not right. Her vision is now very low, and has no side vision. Have you seen JPA patients, does vision ever return even if not a gradual full recovery of vision? Also, they could only remove 70% of the tumour. The other 30% can that become a cancerous tumour! and if not, if no considerable growth, can that tumour remain docile and live a full life? Thank you for offering this webinar and for taking the time answering my questions.
Hi Linda - yes the video is still available.
Hi MamaSarah:
In regards to low grade brain tumors that we were discussing, this is very low. If patients undergo radiation and or chemotherapy, the chance increases but still remains very low. St. Jude Children’s hospital recently published their findings with subsequent brain tumors after radiation/chemotherapy (so most of these were high grade tumors) and they found a 3% chance 10 years out, and a 6% chance 20 years out from treatment.
We manage a lot of patients with JPAs (pilocytic astrocytomas) here. I cannot comment on her specific treatment plan or options however, we typically think of 1 to 2 years for neurological recovery—once outside this window, recovery becomes less likely. It would be VERY UNCOMMON for a JPA to turn into a higher grade tumor. And yes, it is possible, the tumor can remain docile for rest of her life.
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.
The general rule of thumb is that low grade brain tumor reoccur locally—meaning the same location. However, sometimes they can occur in different locations, or even spread around through the coverings of the brain, but this is fairly atypical.
As long as there are no concerning findings on her imaging or biopsy that would suggest a higher grade lesion or an infiltrative one, and her symptoms have improved, I think conservative management with serial imaging is reasonable. However, it really depends on what the imaging looks like. A more diffuse, infiltrative process in the thalamus, even if low grade by biopsy can still act like a higher grade tumor. Whereas, a more focal, circumscribed mass that is low grade, will likely behave very benign.
This is a very difficult question. We too would assume the two lesions would be the same, but that is not guaranteed. The IDH1 mutation was not even discovered in brain tumors until 2008, and is predominately seen in adults; therefore, we have limited data in children with this mutation. Unfortunately I cannot give medical advice over the interent per specific cases, if you would like to request an appointment please click on the “request an appointment” button on this page.. It is unclear at this time if IDH1 mutated tumors in children progress to higher grade lesions, but that is something that we certainly need to think about.