1. < Pancreatic Cancer

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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 11 7:28am
In reply to @craigjulian "I live with a lot of anxiety and fear with this IPMN. I have had nausea,..." + (show)
@craigjulian

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.

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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.

REPLY
1 reply
cjmchicago | @cjmchicago | 5 days ago
In reply to @hopeful33250 "Hello @craigjulian, I am sorry to hear of all of these uncomfortable symptoms you are experiencing...." + (show)
@hopeful33250

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.

Jump to this post

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

REPLY
1 reply
churlgurl | @churlgurl | 4 days ago

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

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 4 days ago
In reply to @cjmchicago "Thanks, Teresa. My MRCP is tomorrow. Worried because of all my symptoms but just want to..." + (show)
@cjmchicago

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

Jump to this post

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?

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