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Benign or Malignant IPMN? What to do next?
Pancreatic Cancer | Last Active: Apr 8, 2023 | Replies (79)Comment receiving replies
This post has given me some hope. An 8mm dilated duct was found in to a CT scan for a kidney stone in 2013 but I was never told. Seen again, when I was told, in June 2022 after a bout if diverticulitis. Consulting physicians in 2022 felt it was a benign condition as I had had it for 9 years. Decided to see a surgical oncologist to be sure. I have an IPMN at the head of the pancreas. Sought 2 second opinions, one said consider a prophylactic Whipple, the other said not necessarily. Right now I am sticking with bi-annual MRCP's and ERCP's where biopsies have been normal. In good health otherwise. Still hoping to find statistics on those followed with IPMN'S. And obviously not everyone is the same.
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I had an IPMN in the tail of the pancreas found in summer of 2021. It was 2 cm. The EUS determined it was benign. So it surveilled again in June 2022. It was 2.1 cm and the main duct was dilated. I had a distal pancreatectomy at the time, and there was cancer found in the resected tissue. But no spread. I was stage 1b. I had 12 rounds of Folferinox and CT scan showed a spot on my liver not previously noticed. Looks like cancer again. Biopsy in a couple of days. CA 9-19 spiked to 650. Doctor had hoped that Folferinox would cure, but now the hope is to control. Like you say, everyone is different and I don't know if any of my experience is helpful, but this form of cancer seems particularly sneaky and hard to stop, even in a case like mine where it started out optimistic. Wish you the best.