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

I have a 1cm BD-IPMN. Just saw a doctor at Mayo who tried to reassure me that only 2% will become malignant. Not consistent with what I've read, but he has ordered an EUS ( my 2nd) and will do another MRI in one year. I would have surgery tomorrow if they would operate, but the guidelines suggest watch and wait. I won't ever be totally comfortable with this approach.

Hi,
Yes, I've had 3 opinions, and all think my IPMN is a very low risk for developing into cancer and my GI symptoms are not related to the IPMN.
So, I guess I will go with what the doctors are saying and live with the GI issues.
I have had all kinds of imaging, blood work, EGD, colonoscopy, stool, and all are normal except this IPMN, and I do have hepatic steatosis- fatty liver- which I had a liver fiber scan and I'm stage 1 liver fibrosis. Again, nothing that would cause my GI symptoms.
I guess I have functional dyspepsia- IBS???
I've decided to start mental health therapy just to deal with my symptoms since nothing more can be done, and I don't have any official diagnosis.
I'm just kind of done.

@craigjulian, have you considered getting a second opinion? How are you doing?

@tls, thinking of you as you recover from surgery.

Hello,
Yes, I was diagnosed with an 8mm possible IPMN in the uncinate process a couple of months ago without ductal dilation or concerning features from the CT scan. I am having an MRCP in July to see where things are at.
I am concerned because I have so many GI issues, but everything I read, and the GI doc thinks my GI symptoms and IPMN are not related. I guess I'm also worried because I had 2 abdominal CT scans about 16 months ago and they didn't see an IPMN. It said my pancreas was normal. This makes me think it is growing quickly. I also read so much conflicting information online about IPMN's. Some say it's a 30% chance a side branch will turn into cancer in my life and other studies say my risk is 1-2%. It's hard to know what to believe or how to prepare for this. At 54, I wonder if I should stop putting money into my retirement.

Hi,
Just curious if you had another CT/MRI for your 8MM IPMN?
Hope you're doing well.

Surgery is scheduled is a tad under two weeks - March 13. I have been doing research on diet and insulin pumps w/ auto glucose monitors.

Being prior lung cancer, preop CT scan and beathing test - clear to go but have some oddities that will put me on a more rigorous lung review going forward especially as pancreatic cancer can move to lungs.

Will send up date after surgery and more aware. I am available for any questions to help others between now and end of day the 12th of March.

Toni

Teresa,

I would be happy to keep you informed as well as ask my own questions.
I am currently in search of someone that uses the Omnipod automated insulin delivery in case you know of anyone.

BTW-in case you couldn't tell I am a very fact based, optimistic resilient person. I've been gifted some time to do deep dive research into various aspects of this surgery, recovery and life after.

Thank you so much for the reach out. Omnipod????

Toni

Hello @tls

I appreciate the information you provided. Your suggestions about getting a good GI specialist and a baseline EUS are good suggestions for all of us. Will you continue to post with questions and concerns? I would especially like to hear from you again after the total pancreatectomy.

Wishing you all the best!

I will share my story below. My question to you is what are you seeing or feeling besides the IPMN that concerns you of having pancreatic cancer? That by itself is not a "worrisome feature."

They found my IPMN (a single 1.3 cm) early 2022. I had an EUS with biopsy early 2022. Per the request of my PCP I had a second opinion EUS with biopsy at MD Anderson in Houston (summer 2022.) Both were classified as IPMN but not communicating with main pancreatic duct (no worrisome features meaning a reason to look deeper for cancer.) They followed me with MRCPs at 6 months then a year. My Lipase and Amylase levels were normal but I did not feel well so my gastro had me do a fecal Electees (sp) which showed I was very deficient in pancreatic enzymes. I take Creon 24,000 IU with every meal.

Last year I moved to a new area and found a new set of doctors. My new gastro did the annual MRCP that come back with a reading of almost 4 cm for the cyst they had been monitoring, Now we have worrisome features (rate of growth AND over 3 cm) plus a new one of 1.4 cm. BTW all on the head and uncinate. January 27 of this year he performed an EUS. He only did a biopsy of the new one. The original IPMN of 4 cm are actually 2 sitting side by side making it look like one large one. One is definitely non-cancerous. The second he was concerned on touching it for fear of setting off a severe bout of acute pancreatitis which happened to me after Anderson. The biopsy of the new cyst was performed since it was on the outside edge of my pancreas AND it had a very small nodule in it (also a worrisome feature.) Biopsy came back showing reactive cells and a high CEA rate. The EUS (endoscopy ultra sound that can get a great look up close of the pancreas and cysts) also showed that the rest of my pancreas was shot.

I am having a total pancreatotomy in the next few weeks.

Get a good gastro, have a EUS to get a baseline to compare to MRCPs, enzyme testing as well. Watchful waiting. I have gone 3 years and just now have the need for surgery, hopefully early and no spreading. I am not yellow. I have not lost weight. I will say that the very beginning concerned me but once I understood the process and felt confident that I had very smart caring specialists to monitor I relaxed and just had the MRCPs to monitor until the time for a EUS that says lets take it all out BEFORE it can go crazy.

BTW - 8 years ago they found I had lung cancer. Again, I was blessed to find it early. They removed my top right lobe and lung life is great. FYI - lung cancer does not move to the pancreas.

This is a lot of information, but it was and is my journey that so far has gone great. Hope it helps you.