My 15 year old son was diag.with a ganglioglioma Grade 1 and had it resected 1 1/2 months ago. There's not much information that I can discover about long term survival, or insight from people that have had this tumor. Can someone please share with me an experience that is positive ? I just need piece of mind!

Thank you in advance...

I'm obsessing about it.

Mark

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Comment by Susan Goodwin on January 26, 2013 at 1:26pm

Hi Mark.  First, I must say the only thing I can imagine much worse than having a brain tumor is if it were my son ... 19 years now.  It is possible not to obsess about our kids?  Anyway, I am not neuroscientist .. just one person with a story.  I had a DNET tumor (grade one, slow growing) similar to what your son had.  I had it removed three years ago ... lost most of my right temporal lobe and hippocampus.  I hope that if you look at outcomes for resections of Grade 1 ganglioglimas, you will feel optimistic.  What I would add is to be aware of he emotional effects that can go along with these events.  No doubt doing this at age 53 as opposed to 17 is very different, but the surgery and some of the drugs can leave some of us with a sense of losing our selves and alot of reassurance from friends and family affirming who we are as people and that we are the same person can go along way.

Comment by MarkSears on January 9, 2013 at 11:43pm
Thanks Shelby! Everything that we are being told is positive, but scared like crazy. Looking forward to hearing from you!!!
Comment by Yaelle Glenn on January 6, 2013 at 12:11am

I dont know how helpful this is, but I can tell you that its not possible to obsess about an issue this major.  Just...wanted to let you know that.  

Comment by Shelby Melton RNS on January 4, 2013 at 5:33am

I will do some research.  I am an RN so maybe can find some info for you :)

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