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Interactive Webinar: Treatment of Pediatric Brain Tumors: Low Grade Gliomas

Thu. May 28, 2015 at 11:30 am CST

An overview of treatment options for children with low grade gliomas will be discussed. The webinar features Mayo Clinic Pediatric Neurosurgeon, David Daniels, MD and Mayo Clinic Pediatric Neurologist, Gesina Keating, MD. Both physicians will discuss diagnosis and treatment options including: observation, surgery and chemotherapy. Follow-up care for children with low grade gliomas will also be discussed including: Pilocytic Astrocytomas, Gangliogliomas, DNETs and other low grade brain tumors. After the presentation Dr. Daniels and Dr. Keating will participate in a live question and answer session. Sign up to ask questions and to receive email reminders.

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nellie7

nellie7 wrote:

Well thats the problem. It was 9 yrs ago on 2/23/16 and my brain surgeon since then has passed away. He was one of the best in the world and now I do not know who to contact.

Posted Tue, Mar 8 at 11:58am CST

I'm sorry to hear that. How wonderful that you were in the care of one of the best in the world. Luckily physicians share knowledge and expertise. I bet you he trained many.

If you would like to inquire about Mayo Clinic expertise, you can use the contacts on this page http://mayocl.in/1mtmR63.

You may also want to connect with @jackiewizardof to talk about this. She is 24 and 20-year brain tumor survivor. See more of her posts here https://connect.mayoclinic.org/discussion/hello-well-i-am-52-and-found-out-yesterday-that-i-have-something/

Posted Tue, Mar 8 at 12:58pm CST

nellie7

nellie7 wrote:

I am not sure. I just seem to occasionally experience the "aura" that i used to experience right before my seizures but a seizure does not occur.

Posted Tue, Mar 8 at 10:57am CST

That must be a bit unsettling. I recommend asking your doctor about it.

Posted Tue, Mar 8 at 11:38am CST

nellie7

nellie7 wrote:

Is it possible for dnet brain tumors to grow back?

Posted Tue, Mar 8 at 9:21am CST

Hi @Nellie7, while it is possible for DNET tumors to come back (recurrence), the majority of patients do not experience recurrence. Are you concerned that a tumor has returned?

Posted Tue, Mar 8 at 10:11am CST

mommydevins

Liz wrote:

I posted a question after the webinar and Dr. Daniels responded that he could review my daughter's MRIs. What address can I send these for him to look at ? Would I send an initial diagnostic MRI and her most [...] View full text  

Posted Mon, Nov 30 at 9:37pm CST

Hi @mommydevins. I will follow-up and get back to you through a private message.

Posted Tue, Dec 1 at 8:05am CST

My 4yo son has 7 JPA tumors. Several are inoperable (optic nerve, brain stem, near pituitary) so there is no point in operating on the others. So far carbo/vinc has kept them in their place. We've been told he doesn't [...] View full text  

Posted Thu, Jun 11 at 10:25am CST

twinklestars

J wrote:

What are some of the major differences (pathology, rate of recurrence, viable treatment options, etc.) between pilocytic and fibrillary astrocytomas?

Posted Thu, Jun 11 at 10:16am CST

Anonymous wrote:

How are adult and pediatric brain tumors different?

Posted Tue, Jun 9 at 9:12am CST

alexsimon

Alex Simon replied:

There are many differences and this would take a considerable amount of time to discuss this in detail. We will briefly mention a few of the important ideas. Low grade brain tumors, including pilocytic astrocytomas, DNETs, gangliogliomas, are more common in children then adults. These tumors can be cured by simply taking the whole tumor out in most cases. These tumors do not turn into higher grade tumors with time. In contrast, most low grade gliomas in adults are grade 2 infiltrating astrocytomas, and despite a gross total resection, do reoccur and with time, turn into higher grade tumors. Additionally, when children become young adults, the factors that previously drove tumor growth, are no longer present and most residual tumors remain quiet for the remainder of time.

Posted Tue, Jun 9 at 9:12am CST

thinkjpa

Chris wrote:

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 [...] View full text  

Posted Thu, May 28 at 6:49pm CST

alexsimon

Alex Simon replied:

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.

Posted Tue, Jun 9 at 9:03am CST

mommydevins

Liz wrote:

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 [...] View full text  

Posted Thu, May 28 at 3:48pm CST

alexsimon

Alex Simon replied:

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.

Posted Tue, Jun 9 at 9:08am CST

Lost all sound at 10:46

Posted Thu, May 28 at 1:50pm CST

Is it common for an Oligodendroglioma to return in a different location than the original tumor?

Posted Thu, May 28 at 1:42pm CST

alexsimon

Alex Simon replied:

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.

Posted Tue, Jun 9 at 9:08am CST

theresa4

Theresa wrote:

My 11-year old daughter was diagnosed with a low grade glial neoplasm in the right thalamus (23 mm x 21 mm) in February. Because of its location only a small sample was recovered for biopsy. She presented with headaches, but [...] View full text  

Posted Thu, May 28 at 1:24pm CST

alexsimon

Alex Simon replied:

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.

Posted Tue, Jun 9 at 9:09am CST

mommydevins

Liz wrote:

I wasn't able to watch the webinar. Will it be available to watch again? Is there still a chance to ask questions of the doctors?

Posted Thu, May 28 at 1:11pm CST

alexsimon

Alex Simon replied:

Hi Liz - yes you watch the webinar anytime on this page and later on YouTube. We experienced some technical issues and are working to update those on the post-viewing version. Please ask your question here and I can share with the physicians.

Posted Thu, May 28 at 1:24pm CST

kimwalton

kim walton wrote:

My 10 year old daughter with the IDH1 mutation has just finished carboplatin vincristine as a treatment. She has 2 diffuse astrocytomas. The last 2 MRI's have been stable. We have been watching these tumors for 5 years prior to [...] View full text  

Posted Thu, May 28 at 12:42pm CST

alexsimon

Alex Simon replied:

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.

Posted Tue, Jun 9 at 9:10am CST

heatherdeuel

HeatherDeuel wrote:

Thank you for addressing my question. If it matters, her tumor was on the temporal lobe (right hemisphere). (Emotionally struggling ganglioglioma resection)

Posted Thu, May 28 at 12:25pm CST

lobmmb

Margie wrote:

Our 4 y/o son had DNET removed (90-95%). Do you have any data, insight, etc., in terms of genetic / hereditary incidence for siblings or across generations? Thank you.

Posted Thu, May 28 at 12:20pm CST

alexsimon

Alex Simon replied:

In regards to a sporadic DNET, there is no evidence to support a genetic abnormality that can be seen across generations. There are tumor disorders such as neurofibromatosis 1 and 2, that can be seen across generations, but other tumor types are common, such as pilocytic astrocytomas, acoustic neuromas, etc.

Posted Tue, Jun 9 at 9:11am CST

mamasarah

MamaSarah wrote:

You spoke of the grade of a tumor in pediatrics holding true throughout its life. What is the likelihood of a 2nd tumor of a different grade developing?

Posted Thu, May 28 at 12:20pm CST

alexsimon

Alex Simon replied:

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.

Posted Tue, Jun 9 at 9:00am CST

clundby722

Christy wrote:

My son has a JPA in the brainstem. I have heard that this type of tumor tend to stop growing in their 20's - is this true??

Posted Thu, May 28 at 12:19pm CST

lindyp

Lindyp wrote:

My 3 1/2 grandson with Pilomyxoid Astrocytoma has hypothalamic obesity as well V Sica. Surgeon also advised against surgery. Basically inoperable. I worry about the obesity. He also has nystagmus and learning delays

Posted Thu, May 28 at 12:07pm CST

lindyp

Lindyp wrote:

missed a lot of this. will video be available online later?

Posted Thu, May 28 at 12:03pm CST

alexsimon

Alex Simon replied:

Hi Linda - yes the video is still available.

Posted Mon, Jun 1 at 9:16am CST