Anyone have/had BD-IPMN (branch duct intraductal papillary mucinous)?

Posted by pattyclaire @pattyclaire, May 17, 2023

CT showed it as a hypodensity then MRCP showed it is a 1 cm BD-IPMN. I had to push for the MRI/MRCP because the gastroenterologist completely dismissed it as “nothing” and wanted to follow up with “another CT in a year” even though my symptoms are abd pain, nausea, and weight loss. So now MRCP shows it is a IPMN. I was referred to a different GI doc but I am afraid he will also not take it seriously due to it being small, only 1 cm. In my gut I believe I have PC. I just want a GI doc to take it seriously and get the diagnosis. Has anyone had a IPMN that was benign or malignant on biopsy? Also, can’t 1 cm still be PC? I imagine it is unusual to catch it so small but shouldn’t we still be aggressive for diagnosis even though it is < 2 cm? These docs make me feel like I’m over-reacting and it is so frustrating. I know I won’t be satisfied until I have it biopsied. Am I over-reacting?

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brendagailb | @brendagailb | 2 days ago

I have had a BD-IPMN since 2015 (Mayo). I have had MRCPs and labs every 6-12 months. The cyst started out 1.2 cm. It is now 2.3 cm. My CEA is 3.8, my CA 19-9 is 70 (doubled since 2022)). However, there is no evidence of worrisome features on EUS X 3, the last one being a year ago. I do not have any clinical symptoms of PC. I am being followed at Duke by GI oncology. My next MRCP and labs are in August. Hopefully, the MRCP will show no growth of the cyst and my labs will be stable.