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Just diagnosed with pancreatic NET stage 1

Neuroendocrine Tumors (NETs) | Last Active: May 14 8:56pm | Replies (152)

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@elm60

Hi @kt348
I had a similar experience during a endoscopic ultrasound of a liver biopsy. My less than 1cm tumor 6 mm x 7 mm, ki 67 <3% stage 1, was found in my neck of the pancreas. I also had a history of GI issues all my life. I actually went in for a Whipple at the urging of my hepatologist, since everything goes fast with me..and the surgeon ended up doing a partial Pancreatectomy, but he was unable to see the tumor! I actually waited another 9 months and the tumor was picked up on a CAT scan and had grown. I waited another 7 months for better insurance and went to Mayo Clinic in Jacksonville for surgery and they also have a NET Specialist Oncologist as well! They actually found two tumors, one on the head and one on the remaining tail. I had a modified Whipple leaving the head of the pancreas, taking the remaining tail, spleen, gallbladder and part of the stomach, as the prior surgeon attaches the pancreas to my stomach wall! Both surgeries were very tough. I was 59 at my last surgery. I recently developed diabetes type 3c as a result of pancreatic insufficiency. Almost 3 years out in February, I am doing well. Be sure to check out other NET facebook groups as there are others out there facing your same situation! Please get a NET Specialist and opt for the watch and wait! All the best!

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Replies to "Hi @kt348 I had a similar experience during a endoscopic ultrasound of a liver biopsy. My..."

After they removed the tumor they found another two ?