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Anyone have/had BD-IPMN (branch duct intraductal papillary mucinous)?
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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@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?
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
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2 ReactionsI 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.
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4 ReactionsHello @atlmike21 and welcome to Mayo Connect. I am always pleased to hear members being proactive about their health care. As you said in your first post, "I want to make sure I find the best doctor..."
I have had several IPMNs for several years (10 plus years) with regular follow-ups and no changes in the amount nor size. A lot of members are like myself and have not had PC develop. However, you are wise to follow up. You said that you have a consult with a surgical oncologist. Was this doctor referred to you by another physician?
I also have discomfort in my ribs on the right side and some down in the right side of my stomach but I'm not sure if it's related.
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1 ReactionI just discovered, after having a follow-up to an ultrasound that showed liver hemangiomas, that I have a BD-IPMN of 1.4 cm. It doesn't have concerning features or HRS, but I am really concerned. Like others have mentioned here, I have seen all sorts of different odds on whether these could develop into PC and I'm honestly pretty scared. I have a consult with a surgical oncologist next week.
It seems like these things almost always grow and there is a chance of developing more. I'm honestly not sure what to think about my prognosis. I want to make sure I find the best doctor but that is also hard to know.
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1 ReactionI still feel the same with the same GI symptoms- nausea, indigestion, and sick stomach, but I guess mentally I feel a bit better.
Thanks for asking.
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1 ReactionI appreciate the update, @cjmchicago. It sounds as if your doctor is being thorough as he wants to do another MRCP in a year.
How are you feeling?
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1 ReactionI had my MRCP, and they didn't find a pancreas cyst. The report says No pancreatic lesion corresponding to the recent CT finding.
Pancreas: Homogeneous parenchyma. No definite lesion corresponding to finding on CT which may have represented the pancreatic duct.
I'm happy, confused, and not sure what to think.
My GI doc thinks the MRCP is a much better scan for pancreatic cysts and believes the MRCP over the CT but still wants to do another MRCP in a year.
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1 ReactionI look forward to hearing from you, @cjmchicago, after your MRCP. I hope that all goes well for you and get some answers and understanding as to what is going on. I especially hope that you are able to get some symptom relief.
Will you post again with an update?