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 | May 26, 2025

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.

erinmck | @erinmck | 1 day ago

Hello everyone, I know this is a relatively old thread but I’m currently awaiting further tests for a 1cm BD IPMN with worrisome features and symptoms. So far a CT scan and MRI have picked up the lesion and flagged it as having thickened walls and enhanced on scan images. I also got the results of a CA 19.9 blood test today - it was up in the 30’s but still just within the “normal” threshold. Next step is a PET scan, EUS and further blood work. I haven’t slept for about a week with the anxiety of the unknown. I’m also very worried about allowing a biopsy during the upcoming EUS as I’ve heard horror stories about lesions then going on to become malignant and/or metastasise. Anyone have any words of wisdom or experiences and advice? Thanks, Erin

Turkey, Volunteer Mentor | @tomrennie | 13 hours ago

In reply to @erinmck "Hello everyone, I know this is a relatively old thread but I’m currently awaiting further tests..." + (show)

@erinmck Hi and welcome to Mayo Connect. First off, don't get too far ahead of yourself. Diagnosis and developing a treatment plan is a process. You have to work your way through it. Second, I understand the anxiety. Where are you reading about the horror stories on an EUS? I have had a few without problems. Make sure that you are getting your information from credible sources. There is a lot of misinformation on the internet and AI isn't always accurate. Third, take a deep breath. Folks on Mayo Connect are here to learn and share together. We are a community. I have learned so much from others. How are you feeling overall? What three things are you most concerned about?