Pancreatic Disorders Group: Introduce yourself and connect with others

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?

@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.

@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.

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.

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?

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