Accidental Mixed-Duct IPMN? Straight to Whipple procedure?

Posted by new2dis @new2dis, Apr 20 4:09am

Hi all, a few questions I hope I can get answered here... fully accepting that individual circumstances all differ and this is just an online forum. Sorry if I won't reply to you all...

BACKGROUND
1) healthy, in early middle-age
2) contracted COVID-19 mid-last year [no vax]
3) CT scan = fatty liver, 5mm gallbladder defect plus accidental, possible IPMN finding
4) asymptomatic, with only a few, sharp episodes of abdominal pain in last 3 years
5) EUS = Mixed-Duct IPMN with a "high-risk" side-branch lesion in the head [specifically: pancreatic duct dilated throughout (6mm head, 5mm body, 3mm tail) with fleck mucin in the head; 15mm side-branch lesion with thick wall and mossible mural nodule (mucin within); but pancreatic parenchyma and biliary duct normal]
6) MRCP = diffuse dilatation more suggestive of fibrotic stricture than intraductal IPMN, with no cholangiocarcinoma, ductal or periductal lesion seen
7) ERCP = moderate 6mm dilatation of ventral pancreatic duct in the head, with mucus and abnormal papillary lesion seen only at the level of the duct in the pancreatic duct... but still reported as Mixed-Duct IPMN diagnosis?
8) Biopsy = No high-grade dysplasia or invasive carcinoma identified (based on limited sample)
9) Blood tests, including tumor markers, all normal
10) But at last consultation, suddenly advised to undergo Whipple procedure.

QUESTIONS
A) Given byopsy and blood test results, no cancer symptoms, and ERCP results... are they wrong to still consider condition as Mixed-Duct IPMN?
B) Is Whipple procedure an overly conservative and pre-emptive approach at this point? Alternatives?
C) How prominent is diabetes following Whipple procedure? Being healthy and active, major post-operative issues or changes to worry about?
D) Any measure to prevent the condition worsening?

Thanks in advance 🙂

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Hello @new2dis and welcome to Mayo Connect. You are asking good questions. As you already know, the members of Mayo Connect do not represent medical professionals, we are patients like yourself. That said, many of us have a diagnosis of IPMN, fatty liver, etc.

Before you consider a Whipple procedure, I would encourage you to get a second opinion. If you are able to consult with Mayo Clinic that would be great place to gather information and a second opinion. Here is a link with appointment information, http://mayocl.in/1mtmR63.

If, for any reason, an appointment at Mayo is not possible, I would recommend that you get a second opinion at a Pancreatic Center of Excellence. Here is the website for the National Pancreatic Cancer Foundation, https://www.npcf.us/cancer-centers/. If you contact this organization, they will probably be able to help
you find a pancreatic specialist in your area.

One of the most important things you can do now, is to get another professional opinion and some education about this issue. I look forward to hearing from you again. Will you continue to post with updates?

REPLY

C) How prominent is diabetes following Whipple procedure? Being healthy and active, major post-operative issues or changes to worry about?

My non-fasting glucose was pretty high at the time of my initial PDAC diagnosis. Pancreas was obviously not functioning properly... was given some counseling, insulin, and a Dexcom.

Post-Whipple, definitely diabetic. Decent control if I exercise and watch what I eat, but can't avoid some sugar spikes w/o insulin.

PEI (Pancreatic Enzyme Insufficiency) is another outcome of having your pancreas chopped in half. You may need enzyme replacement (e.g., Creon) to digest food properly after a Whipple.

REPLY
@hopeful33250

Hello @new2dis and welcome to Mayo Connect. You are asking good questions. As you already know, the members of Mayo Connect do not represent medical professionals, we are patients like yourself. That said, many of us have a diagnosis of IPMN, fatty liver, etc.

Before you consider a Whipple procedure, I would encourage you to get a second opinion. If you are able to consult with Mayo Clinic that would be great place to gather information and a second opinion. Here is a link with appointment information, http://mayocl.in/1mtmR63.

If, for any reason, an appointment at Mayo is not possible, I would recommend that you get a second opinion at a Pancreatic Center of Excellence. Here is the website for the National Pancreatic Cancer Foundation, https://www.npcf.us/cancer-centers/. If you contact this organization, they will probably be able to help
you find a pancreatic specialist in your area.

One of the most important things you can do now, is to get another professional opinion and some education about this issue. I look forward to hearing from you again. Will you continue to post with updates?

Jump to this post

Thank you for the direction... unfortunately, I am overseas! But will definitely work towards getting a second opinion.

REPLY
@markymarkfl

C) How prominent is diabetes following Whipple procedure? Being healthy and active, major post-operative issues or changes to worry about?

My non-fasting glucose was pretty high at the time of my initial PDAC diagnosis. Pancreas was obviously not functioning properly... was given some counseling, insulin, and a Dexcom.

Post-Whipple, definitely diabetic. Decent control if I exercise and watch what I eat, but can't avoid some sugar spikes w/o insulin.

PEI (Pancreatic Enzyme Insufficiency) is another outcome of having your pancreas chopped in half. You may need enzyme replacement (e.g., Creon) to digest food properly after a Whipple.

Jump to this post

Many thanks for taking the time to respond and share your experience, Mark. It's exactly the type of "real life" information I am looking for (as others), but that specialists say they can't guess over (or are afraid / incentivized not to confirm). I hope you are managing it all well 🙂

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@new2dis

Thank you for the direction... unfortunately, I am overseas! But will definitely work towards getting a second opinion.

Jump to this post

are you in Europe?
I visited the Champalase Pancreas center in Lisbon. Beautiful facility and qualified, engaged doctors.
(I may not have spelled correctly, but it is on the riverfront)

REPLY

I don’t know anything about IPMNs so sorry I can’t help you out with that topic, but there are several in this forum who have experience or knowledge about it.
Regarding diabetes potential: I believe it depends on how much of your pancreas is removed during the surgery. Islets of Langerhans “which produces most of the insulin are located primarily in the body and tail of pancreas. I had 70-75% of my pancreas removed during my distal surgery and I sure have a significant blood sugar problem which is probably also very prevalent because I love frozen yogurt and doughnuts, unfortunately! If you had even borderline diabetes or controlled type 2, then you may have it after. I wear a blood sugar sensor on my arm (freestyle 3), and it does help tremendously to keep track of blood sugar levels, and I take insulin before every meal. I hope you receive the guidance you need about the IPMN. Always consult with another dr for their opinion if you have doubts about your current care.

REPLY

My wife had Whipple surgery December 2023 for a ductile adenocarcinoma in the head of the pancreas. Stage 2b. She has shown zero signs of diabetes - we're lucky. She does take Creon for digestion assistance. Wish you well.

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@gamaryanne

are you in Europe?
I visited the Champalase Pancreas center in Lisbon. Beautiful facility and qualified, engaged doctors.
(I may not have spelled correctly, but it is on the riverfront)

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Oceania... but who knows, Europe could be an option!

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@mnewland99

I don’t know anything about IPMNs so sorry I can’t help you out with that topic, but there are several in this forum who have experience or knowledge about it.
Regarding diabetes potential: I believe it depends on how much of your pancreas is removed during the surgery. Islets of Langerhans “which produces most of the insulin are located primarily in the body and tail of pancreas. I had 70-75% of my pancreas removed during my distal surgery and I sure have a significant blood sugar problem which is probably also very prevalent because I love frozen yogurt and doughnuts, unfortunately! If you had even borderline diabetes or controlled type 2, then you may have it after. I wear a blood sugar sensor on my arm (freestyle 3), and it does help tremendously to keep track of blood sugar levels, and I take insulin before every meal. I hope you receive the guidance you need about the IPMN. Always consult with another dr for their opinion if you have doubts about your current care.

Jump to this post

Thank you for taking the time to share that, Marie

REPLY
@vector

My wife had Whipple surgery December 2023 for a ductile adenocarcinoma in the head of the pancreas. Stage 2b. She has shown zero signs of diabetes - we're lucky. She does take Creon for digestion assistance. Wish you well.

Jump to this post

Thanks vector! Glad to hear your wife is doing well on the diabatic front, and I hope surgery has not caused other issues. All the best to her too!

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