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New PNET Question Re: Surgery (I'm in bit of a pickle)
Neuroendocrine Tumors (NETs) | Last Active: Aug 7, 2025 | Replies (16)Comment receiving replies
There is a net specialist at Duke, Michael Morse. There's one other in Concord, NC. You can find their info at http://www.netrf.org under Find a Specialist.
Also, one of the top net surgeons is in Louisiana. Phillip Boudreaux. His info is also on the netrf site.
It's very important to seek out a net specialist as many general oncologists don't have the required knowledge to properly treat this disease, which is a very different animal.
Was the tumor biopsied? What is the ki67 rate? This will tell you how aggressive (or not) it is.
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Linda, Awesome - thank you for sharing. This is good information, and I did find a surgeon at Duke and he works with Michael Morse, so that is reassuring. Is the LA surgeon you are referring to female and in New Orleans? If so, she may been at the conference I was at last week in Alabama. I never heard of Phillip, so thank you for sharing this with me, I will also look him up. I feel like I am losing my mind at times, so this is helpful. The tumor was biopsied on 5/14, came back malignant. Pet Scan was 5/29 which confirmed the SVU was 33 for the pancreas, and the T3 lit up too. That is the part I am freaking out about. It was < 2 well differiencted. It looks like I have a cyst on my liver but no mets in my liver, but I am praying it doesn't spread! Is it just a matter of time? I am not on meds, therapy nada. Just watching right now, until the scan.