IPMNs, concerned for diffuse pancreatic parenchymal atrophy

Posted by sb4ca @sb4ca, Mar 19 11:55am

Hi,

I almost feel whinny posting here. I don't have pancreatic cancer but I am looking for insight into pancreas changes. I have chronic hepatitis thought to be drug induced (2 biopsies); had GB removed 20 years ago. I had an MRCP over a year ago which showed .5 cm main pancreatic duct dilation (in addition to hepatic main duct dilation (13mm) and now mild intra-hepatic dilation) along with two very small cysts; one close to head and the other tail, both thought to be branch IPMN's. The objective of the test was to monitor those tiny cysts.

I just had the MRI again but this time it is noted for "diffuse pancreatic parenchymal atrophy", whereas prior there was none. I've read there is age-related parenchymal changes with fat replacement but that was noted to be a slow moving change. On the other hand, I've read that diffuse changes can be a key pre-cancerous finding. I am a thin female in mid-60's with history of weight loss and mild diarrhea. I also have a primary immune deficiency and am now treated with IVIG.

I guess my question is, given the cysts have not grown, would this be considered just an incidental finding? I am wondering if the changes could be related to an enzyme obstruction making it more of a GI issue? I know I have low serum bile acids and no intestinal alp isoenzyme-but whether that is related I have no clue. I have never had abnormal testing related to amylase or lipase. I have never had pancreatitis. Twice I had a tumor marker tested-once it was elevated but when repeated months later it was normal. Of course I will ask these questions to my doctor, but was hoping for some experience-based insight into this kind of thing.

Thanks for listening.

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I just had a second MRCP to follow 2 tiny IPMN's; one in uncinate process the other in the tail that were found in '22. Would the uncinate be considered the head?
Neither of these have grown, but the report says an endoscopy should be done to rule out stricture/obstruction. I got a call today (saturday) and was scheduled for EUS ERCP/pancreas. I just had one of those in '23. Anybody have any insight here?

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@sb4ca

I just had a second MRCP to follow 2 tiny IPMN's; one in uncinate process the other in the tail that were found in '22. Would the uncinate be considered the head?
Neither of these have grown, but the report says an endoscopy should be done to rule out stricture/obstruction. I got a call today (saturday) and was scheduled for EUS ERCP/pancreas. I just had one of those in '23. Anybody have any insight here?

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Hi @sb4ca, I moved the 2 discussions you started into one discussion, so that members can follow your diagnostic testing journey. I can imagine that you have lots of questions and that you are making a list to ask your doctor.

When are you scheduled for the ERCP (endoscopic retrograde cholangiopancreatography)?

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@colleenyoung

Hi @sb4ca, I moved the 2 discussions you started into one discussion, so that members can follow your diagnostic testing journey. I can imagine that you have lots of questions and that you are making a list to ask your doctor.

When are you scheduled for the ERCP (endoscopic retrograde cholangiopancreatography)?

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Thanks Colleen, I am hoping for some feedback. I made a list of questions and have already sent it through my portal and tomorrow have a phone consult to review them. I have the EUS ERCP scheduled for July. But I have just had one last year so I'm a bit baffled by this. One of my questions is related to accuracy of EUS ERCP vs MRCP. You would think the EUS would be more accurate yet it failed to show the cysts that both MRCP showed. And now MRCP is suggesting further testing with concern of mass or stricture. I feel like I'm going in circles. Thanks for your help.

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Biopsies and biopsy reports are very important. I suggest you send your tissues to Johns Hopkins. They know what they’re looking at. The earliest report you can get is the best.

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@sb4ca

Thanks Colleen, I am hoping for some feedback. I made a list of questions and have already sent it through my portal and tomorrow have a phone consult to review them. I have the EUS ERCP scheduled for July. But I have just had one last year so I'm a bit baffled by this. One of my questions is related to accuracy of EUS ERCP vs MRCP. You would think the EUS would be more accurate yet it failed to show the cysts that both MRCP showed. And now MRCP is suggesting further testing with concern of mass or stricture. I feel like I'm going in circles. Thanks for your help.

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An MRI or MRCP is the method of choice in accurately assessing whether an IPMN is communicating with the main duct or strictly in the side duct. Indeterminate cysts and analysis if cyst fluid can be better using EUS.

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@stageivsurvivor

An MRI or MRCP is the method of choice in accurately assessing whether an IPMN is communicating with the main duct or strictly in the side duct. Indeterminate cysts and analysis if cyst fluid can be better using EUS.

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Thank you for your comment. The concern is actually not the IPMN's as far as I know-they are >5mm. The concern is for a mass or stricture likely in the area where the head/duct meets the small intestine from what they have told me (I spoke with them after I posted this). The reason they are thinking this is because of increased duct dilatation in the pancreas, liver CBD, and intrahepatic ducts. So they think it is a pressure issue downstream from the liver. My confusion is why last year's EUS/ERCP didn't show any obstruction or this new ERCP. Is it possible that without any suspicion of a stricture, that area was not looked at? Or maybe that area is hard to image and something like a stone could hide there.

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