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

I 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.

I 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?

I have an IPMN that I’ve had for 14 years. Originally 0.9ml, and stayed that way for 9 yrs. A few years ago it began slowly growing, now 1.4 cm. Having another CT next month. I’ve had several MRCPs, last one 2 yrs ago at J. Hopkins and doctor could not find cyst. It still shows up on CT so not sure why she could not find it and she dropped the ball after MRCP. Mine is in a very difficult area to reach and was originally told “no surgeon will touch this until it grows and looks cancerous”. So I feel like I am a walking time bomb, especially now that it is slowly growing. I was also told for many years not to worry about it unless it grows, and now that it is growing docs continue to ignore. Hope you can get to place that they can put you at ease. Most likely they will follow it to make sure it remains stable

Thanks, Teresa.
My MRCP is tomorrow. Worried because of all my symptoms but just want to get it over with.

Hello @craigjulian,

I am sorry to hear of all of these uncomfortable symptoms you are experiencing. I would encourage you, however, not to jump to conclusions that are not valid at this time. I am glad to hear that you will be having the MRCP next week. I hope that will put your mind at ease.

The good news is that your blood work is normal. Are there any activities that you can get involved in right now to take your mind off the worst-case-scenario that is causing you to be so upset right now? I'm thinking about lunch with friends, perhaps seeing a movie or getting involved in a hobby or craft that you enjoy?

I look forward to hearing from you again. I'm also wondering if you have started taking the Creon yet to see if that helps your symptoms.

I live with a lot of anxiety and fear with this IPMN. I have had nausea, indigestion, bloating, trapped gas, and a lot of constipation for 18 months. Last week my GI provider did a Pancreatic Elastase-1 stool test and it was 54 which means I’m severely deficient in pancreatic enzymes. So now I also have EPI and she wants to put me on Creon to help with digestion. I also have developed middle back pain about a week ago which is adding more fuel to my fire. So now, I have all these GI symptoms, EPI, 0.8 cm IPMN in the uncinate process, middle back pain, and mild pancreatic atrophy, I’m panicking that I have pancreatic cancer or that it’s coming soon. All my labs, including lipase and lypase are normal and I did a CA19-9 three months ago and it was 4. I moved up my MRCP to next Thursday. That’s where I’m at today.

Add me to this category as well…June 2023 they found a cyst on my pancreas. Mayo Rochester / Jacksonville have been monitoring mine with MRI Contract scans every 6 months (now every 1 year). Currently I am asymptomatic.

Both my Mayo team and 2 PCPs say the same,..that the majority do not turn cancerous. At my FIRST Mayo visit, the doctor knew I was
nervous and worried,…he put his hand on my knee and looked me in the eye and said, “Mike, don’t worry, you’re at Mayo”…

That went along way!…

Yes I have the same scanxiety each time. I daily say the ‘Surrender Prayer’ (you can find with an Internet search) to remind me that Jesus will take care of everything and not to worry. He loves you and whatever the outcome it is for your best. It helps knowing Gods will is in control.

My prayers and thoughts are with you. Please do the same.

I agree. There is a ton of solid medical literature that refutes this 2% chance. It's a lot higher.

I got the same reassurance from my GI doctor at NW in Chicago- don't worry about this, it's a very small chance this will ever turn into cancer.
However, all the stats, studies, and information I read online say my risk is a lot higher than 2% in my lifetime. I have read many studies that show a much higher risk. SO, I don't know who to believe or trust.

I, too, am in surveillance now a year into it with having one EUS and three images, MRICP. There are 2 IPMN largest 1.2cm. I found them when had a CT with horrible stomach issues, seems I’m told not related as well. We continued investigating, and did all the testing for gluten, PEI, fecal, blood, and nothing stood out. Booked a nutritionist and did the FODMAP diet. Seems I’m sensitive to dairy now. Issues resolved by taking nutritional supplements, eating and taking probiotics never eating past 6pm (GERD), and no onions, garlic and intermittent 14-16 hours fasting. My doctor thinks it all happened from antibiotics. I’m totally fine now. I just have this horrible scanxiety to deal with as my MRI is due now in a year after initial ones 6mos apart. They seem to be stable. I also went for second opinion to a pancreatic gastro at Mayo in Rochester. Awesome experience! He assured me a low probability of cancer but have to monitor and know the signs of worrisome features. I sent my scan to him for second reviews too.
I’m on with my life now and walking, traveling and just saying a prayer of thanks as I see how fortunate I am to have found it early and not late. I see this as a blessing. I guess that’s my coping skill. Know that you’re not alone!🙏
PS I did lose 10 pounds and kept it off during all this so that was good!