I will share my story below. My question to you is what are you seeing or feeling besides the IPMN that concerns you of having pancreatic cancer? That by itself is not a "worrisome feature."
They found my IPMN (a single 1.3 cm) early 2022. I had an EUS with biopsy early 2022. Per the request of my PCP I had a second opinion EUS with biopsy at MD Anderson in Houston (summer 2022.) Both were classified as IPMN but not communicating with main pancreatic duct (no worrisome features meaning a reason to look deeper for cancer.) They followed me with MRCPs at 6 months then a year. My Lipase and Amylase levels were normal but I did not feel well so my gastro had me do a fecal Electees (sp) which showed I was very deficient in pancreatic enzymes. I take Creon 24,000 IU with every meal.
Last year I moved to a new area and found a new set of doctors. My new gastro did the annual MRCP that come back with a reading of almost 4 cm for the cyst they had been monitoring, Now we have worrisome features (rate of growth AND over 3 cm) plus a new one of 1.4 cm. BTW all on the head and uncinate. January 27 of this year he performed an EUS. He only did a biopsy of the new one. The original IPMN of 4 cm are actually 2 sitting side by side making it look like one large one. One is definitely non-cancerous. The second he was concerned on touching it for fear of setting off a severe bout of acute pancreatitis which happened to me after Anderson. The biopsy of the new cyst was performed since it was on the outside edge of my pancreas AND it had a very small nodule in it (also a worrisome feature.) Biopsy came back showing reactive cells and a high CEA rate. The EUS (endoscopy ultra sound that can get a great look up close of the pancreas and cysts) also showed that the rest of my pancreas was shot.
I am having a total pancreatotomy in the next few weeks.
Get a good gastro, have a EUS to get a baseline to compare to MRCPs, enzyme testing as well. Watchful waiting. I have gone 3 years and just now have the need for surgery, hopefully early and no spreading. I am not yellow. I have not lost weight. I will say that the very beginning concerned me but once I understood the process and felt confident that I had very smart caring specialists to monitor I relaxed and just had the MRCPs to monitor until the time for a EUS that says lets take it all out BEFORE it can go crazy.
BTW - 8 years ago they found I had lung cancer. Again, I was blessed to find it early. They removed my top right lobe and lung life is great. FYI - lung cancer does not move to the pancreas.
This is a lot of information, but it was and is my journey that so far has gone great. Hope it helps you.
Hello @tls
I appreciate the information you provided. Your suggestions about getting a good GI specialist and a baseline EUS are good suggestions for all of us. Will you continue to post with questions and concerns? I would especially like to hear from you again after the total pancreatectomy.
Wishing you all the best!