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Primitive neuro-ectodermal tumor

Posts: 1
Joined: Feb 2007

Has anyone heard of an adult having this brain tumor?

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arkansasbrains's picture
Posts: 38
Joined: Oct 2009

my husband is 29, and was just diagnosed last month with a pnet. he's having radiation now.

Posts: 2
Joined: Jun 2011

Scott was diagnosed back in April, but all information has been vague. His brain biopsy was two weeks ago and we are still waiting for the pathology to confirm specifics and begin chemo or radiation therapy. I have been trying to find any information I can on adult PNET with no results until I found this. I will share with you what I find as I continue to look for additional information. Blessings to you and yours. las

Posts: 1
Joined: Jun 2011

My husband has PNET - diagnosed 6 years ago - surgery, spine and brain radiation and chemo and then 4 years cancer free. It returned over a year ago and he had surgery and then high risk stem cell rescue therapy. It has been a year and he is doing really well. I can provide you all type of info but I know depending on the amount of resection and the doctors treating you everything is a little different!

Posts: 1
Joined: Jun 2011

My thoughts are with you and your husband. Keep a positive attitude. I am a 10 year survivor after being diagnosed with a PNET tumor when I was 26 weeks pregnant with my daughter. I had chemo and surgery and I appreciate every day.


Posts: 8
Joined: Oct 2012

I'm happy that you are doing great.

Our journey started just two weeks ago, my son (almost 14) had a headaches for about a month, when he did not respond do headache medications his doctor ordered a head CT scan for Tuesday morning, one hour after the CT scan we were asked to go to the ER, an MRI was ordered for his head and spin, the MRI confirmed he has a tumor on the upper right side of his brain, it was not inside the brain but on the surface of the brain, the next day he had a brain surgery and the tumor was removed, the Neurosurgeon called me and told me the results of the pathology report confirmed it is a PNET, yesterday the oncologist told us it is PNET Ewings Sarcoma! my son dos not have any pain in his body, the only thing he had was the headache, it is hard for me to go a head and agree with the oncologist assessment.

What do you think.

Thank you,

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