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Adult PNET cancer

Posts: 2
Joined: Apr 2010

Hi all,

I am a 38 year old female who was recently diagnosed with Adult PNET in my spinal area but not my brain. I was just curious if there was anyone else out there who knew anything about this type of cancer. I know it is very rare so any information would be great.


Posts: 2
Joined: Jun 2010

A friend, 48 years old, had surgery for what they thought was kidney cancer 3 weeks ago. He lives in San Francisco. The cat scan showed it large and on one kidney which they removed. After weeks of pathology we found out today they believe it is PNET and not kidney cancer. I've researched the web and see it's very rare in adults so unfortunately can't offer any insights at this time but will keep you posted should I hear.

If anyone has any information they can share it would be greatly appreciated.

Posts: 2
Joined: Oct 2010

I was just diagnosed at the end of August,2010 with Adult PNET after the neurosurgeon removed a tumor from my right temporal lobe. I'm 46 and it was a shock to find out that I managed to have a childhood cancer at this late date. Luckily mine is non-aggressive and will stay localized the the central nervous system (I guess that's lucky, all relative, though) in the brain, doc had to leave some cells in the grooves to avoid messing me up further, and now they need to do a spinal MRI and spinal tap to check for cancer cells there. Then we'll move forward with the radiation when they know what we're dealing with. I'll be talking with my doctor to see if I can pump him for more information and will post it here as far as new treatments and research.

I send love and prayers to all who are fighting cancer, I am with you in spirit! We can survive!


Posts: 2
Joined: Jun 2011

My husband just turned 49 and has been diagnoses with PNET. They are waiting on the pathology from recent brain biopsy and we know nothing else except it is in his brain and he is having probelms with his 3rd cranial nerve. Nothing can be found on adult PNET and I would appreciate anything shared with me. What I want to know is how this disease will progress and what I should be watching for. Thanks.

Posts: 1
Joined: Jun 2012

Im curious to know if anyone knows more about pnet in the kidney. My father was diagnosed about two months ago with kidney cancer. He had a radical nephrectamy about a month ago and just got res,to on the pathology. It seems that the oncologist and surgeon and hospital are still unsure if this is pnet of the kidney or teratoma n the kidney, both of what I understand are not common at all for someone over 70.
They are speaking about preventative chemotherapy. Does anyone have any feedback for me?


Posts: 1
Joined: Aug 2011

HI Joellyn,
I too was diagnosed with PNET on spne, but not the brain. I was diagnosed in 2004, at 40 years old. I had surgery first, as my docs thought it was benign, followed by chemo five days a week off ten days then back on, I finished with the max dose of radiation. I am now cancer free for the past five years, although I have MRIs what seems to be constantly. Stay strong, and know that you are not alone. You can beat this ugly thing, and has been done before, just keep your eye on the golden ring, and you will be in my prayers. Should you have any questions, please don't hesitate to ask. God Bless,

Posts: 2
Joined: Dec 2012

Hi Joellyn
My name is Fran and just last year I was diagnosed in 2011 at the age of 56 having PNET of the spine. As for information there really is not much out there as it is so rare and maybe 1% of adults get this. That's how rare this is. 3 months ago I had my tumor removed as it had attached itself to the spine, aorta and lung. I had chemo and radiation and will find out in 3 months if we got it all. I sent for a packet from the American Cancer Society and they sent me what information they had on PNET. Unfortunately, there is not much out there on adult PNET as it is a childs cancer usually up to the age of about 25 yrs of age or thereabouts.

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