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Moderator

Pancreatic Disorders Group: Introduce yourself and connect with others

Posted by Lisa Lucier, Moderator @lisalucier, Oct 14, 2025

Welcome to the Pancreatic Disorders support group on Mayo Clinic Connect. This group is designed to be a welcoming, safe place where you can meet people living with pancreatic disorders or caring for someone diagnosed with one. Let’s share stories about living with a pancreatic disorder, how we've coped with issues and challenges, and exchange tips so we can feel our best and live our best lives.

Please browse the existing discussions or start a new one.

Let’s start with introductions.

What is your pancreatic disorder story? When were you diagnosed, and what symptoms have you experienced? What helps you?

Interested in more discussions like this? Go to the Pancreatic Disorders Support Group.

Profile picture for heidenout
heidenout | @heidenout | Jan 1 8:57pm
In reply to @hopeful33250 "Hello @heidenout, I'm glad that @lisalucier tagged me when she responded to your post. I have..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @heidenout,

I'm glad that @lisalucier tagged me when she responded to your post. I have had IPMNs for a number of years now with only minor changes in size, so I have not done much besides an MRI every other year. When they were first discovered, I had an EUS (without biopsy or needle aspiration), then for several years I had annual MRIs, and now just every other year.

I was very concerned about them at first, as I have had three surgeries for a rare form of cancer in the upper digestive tract, and I feared that these cysts were more of the same, but there has been no evidence of that after many years.

You mentioned upper abdominal pain and back pain between your shoulders. I have never had any discomfort that I can attribute to the IPMN, but perhaps someone on this forum can relate and respond to your post.

Have you been having regular blood tests that monitor pancreatic functioning?

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@hopeful33250 thanks for the info. I have been monitoring my pancreas function many times a year. Due to unpredictable acute pancreatitis.
I received my recent results from EUS with needle aspiration and it was determined is an IPMN with a CEA level of 9780. I am now pursuing a second opinion and options at MAYO in Rochester in the coming months.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 2 8:33am
In reply to @heidenout "@hopeful33250 thanks for the info. I have been monitoring my pancreas function many times a year...." + (show)
Profile picture for heidenout @heidenout

@hopeful33250 thanks for the info. I have been monitoring my pancreas function many times a year. Due to unpredictable acute pancreatitis.
I received my recent results from EUS with needle aspiration and it was determined is an IPMN with a CEA level of 9780. I am now pursuing a second opinion and options at MAYO in Rochester in the coming months.

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@heidenout
A second opinion is always a good idea, and Mayo Clinic is a great place to go for the consultation. Will you continue to post as you have questions?

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ahnni | @ahnni | Jan 3 8:53am
In reply to @hopeful33250 "@ahnni I appreciate you posting some more information. Has anyone suggested that you have a Whipple?..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

@ahnni

I appreciate you posting some more information. Has anyone suggested that you have a Whipple? If so, another opinion at Mayo Clinic would undoubtedly be appropriate. Here is a link with information for obtaining a Mayo Clinic consult.
http://mayocl.in/1mtmR63.

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@hopeful33250 thank you. I appreciate your support

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bluemorphos | @bluemorphos | Jan 4 11:48am

Hello, I’ve been diagnosed with main duct IPMNs as well as others throughout my pancreas. My doctor at Mayo is suggesting total pancreas removal. I asked her if she knew if others who had had the removal who I might be able to chat with. She is checking on it. If there are others in this group, please let me know. Thank you.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 4 7:49pm
In reply to @bluemorphos "Hello, I’ve been diagnosed with main duct IPMNs as well as others throughout my pancreas. My..." + (show)
Profile picture for bluemorphos @bluemorphos

Hello, I’ve been diagnosed with main duct IPMNs as well as others throughout my pancreas. My doctor at Mayo is suggesting total pancreas removal. I asked her if she knew if others who had had the removal who I might be able to chat with. She is checking on it. If there are others in this group, please let me know. Thank you.

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Hello @bluemorphos and welcome to Mayo Connect. This is a great place to find support!

Here are three discussion groups that mention a total pancreactomy:
- Total Pancreatectomy
https://connect.mayoclinic.org/discussion/total-pancreatectomy/
– Help…need guidance on eating after Whipple
https://connect.mayoclinic.org/discussion/help-need-guidance-on-eating-after-whipple/
- Life after Pancreatectomy: How was your recovery? https://connect.mayoclinic.org/discussion/life-after-pancreatectomy/

I'm tagging fellow members like @beachdog @drileymn @buckslayer @luckyone4321 @chemobile @kjrita @kay2 @wrolsen @charliegolfrep @kamnorris2 who can share their experiences with pancreatectomy and recovery tips, either as a patient or a caregiver.

Has your doctor indicated when this surgery might occur?

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1 reply
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bluemorphos | @bluemorphos | Jan 4 8:27pm
In reply to @hopeful33250 "Hello @bluemorphos and welcome to Mayo Connect. This is a great place to find support! Here..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @bluemorphos and welcome to Mayo Connect. This is a great place to find support!

Here are three discussion groups that mention a total pancreactomy:
- Total Pancreatectomy
https://connect.mayoclinic.org/discussion/total-pancreatectomy/
– Help…need guidance on eating after Whipple
https://connect.mayoclinic.org/discussion/help-need-guidance-on-eating-after-whipple/
- Life after Pancreatectomy: How was your recovery? https://connect.mayoclinic.org/discussion/life-after-pancreatectomy/

I'm tagging fellow members like @beachdog @drileymn @buckslayer @luckyone4321 @chemobile @kjrita @kay2 @wrolsen @charliegolfrep @kamnorris2 who can share their experiences with pancreatectomy and recovery tips, either as a patient or a caregiver.

Has your doctor indicated when this surgery might occur?

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@hopeful33250
My doctor said I should have surgery in the next few months.

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1 reply
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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 5 8:55am
In reply to @bluemorphos "@hopeful33250 My doctor said I should have surgery in the next few months." + (show)
Profile picture for bluemorphos @bluemorphos

@hopeful33250
My doctor said I should have surgery in the next few months.

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@bluemorphos
Will you keep in touch and post any questions or concerns?

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cobble4 | @cobble4 | Jan 30 9:57am

Hello everyone! Im new to this group and am thankful to have found it. I was diagnosed with Chronic pancreatitis 23 yrs ago. I had a peustow procedure not long after. I am experiencing problems with my Zen Pep for the past 6 months or more. They dont seem to be effective anymore,and I was diagnosed 3 wks ago with significant malnutrition as a result of absorption problems. My question is have any of you experienced this problem and how did they treat it? Thank you

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1 reply
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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 30 11:37pm
In reply to @cobble4 "Hello everyone! Im new to this group and am thankful to have found it. I was..." + (show)
Profile picture for cobble4 @cobble4

Hello everyone! Im new to this group and am thankful to have found it. I was diagnosed with Chronic pancreatitis 23 yrs ago. I had a peustow procedure not long after. I am experiencing problems with my Zen Pep for the past 6 months or more. They dont seem to be effective anymore,and I was diagnosed 3 wks ago with significant malnutrition as a result of absorption problems. My question is have any of you experienced this problem and how did they treat it? Thank you

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@cobble4 Welcome to Mayo Clinic Connect! I’m glad you’re here and can get some answers. I had a definite problem with malnutrition caused by constant diarrhea. I was finally diagnosed with EPI or exocrine pancreatic insufficiency . So I take creon with all my meals and snacks (I just remembered that I forgot the pills with dinner). You might ask your doctor if you could possibly have the insuffiency problem. You would need to see a gastroenterologist for a colonoscopy which is how EPI is diagnosed. After that, life starts to look up!

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greeneyes67f | @greeneyes67f | Jan 31 6:40am

I had an ultrasound 2 wks ago, it showed dilation of main duct pancreas 5.9mm. Just went yesterday for MRI it showed local prominence of main pancreatic duct 5.6mm max @ level of pancreatic head/neck. Main pancreatic duct dialation has progressed since 4 yrs ago, no masses seen no surrounding inflammation to suggest pancreatitis. I did have lab test showed CEA 1.7, CA19-9 35, Amylase 93, Lipase 45. I'm wondering if anyone can help me out with this is it serious for pancreatic cancer, or please give me insights. Thank you

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