Main Duct-IPMN: Conflicted about what to do

Hi @skiball - thank you for sharing your story. I have not experienced the same type of trouble as you as I have had multiple NETs due to a MEN1 mutation. I too was found to have 5 pNETs as a result of a CT scan for a kidney stone so I understand the shock. I ended up having a total pancreatectomy that was the best course of action for me about 6 years ago. I am doing well and managing my health with the support of my care team.

I would absolutely go see one of the leading surgical centers for their recommendations as I understand IPMNs can lead to adenocarcinoma. I have also had good experience in working with the Pancreatic Cancer Action Network at https://pancan.org/ for recommendations to places like Mayo Clinic, Cleveland Clinic, MD Anderson, etc. I would reach out to them to see how they could help.

Hi Matt,
Thank you for your reply. I was seen at Mass General in Boston when I first found out about the IPMN, that was 2023, that highly recommended doctor who does many of these surgeries was inclined to say to do the Whipple proactively. I also saw a doctor at MUSC in Charleston SC and
his opinion was that the Whipple was
not necessarily in my future. How long ago was your surgery, are you back to a new normal? I am a very active person and eat well, non-smoker, not much of a drinker. Where was your surgery? Thank you

Did you receive a diagnosis of pancreatic cancer, and I did re-read that this was 6 years ago for you.

I was diagnosed with 5 pancreatic neuroendocrine tumors (not adenocarcinoma). They were up to 5 cm in size so there was not much choice to remove the entire pancreas during the week of Thanksgiving 2019 at Cleveland Clinic main campus.

The main side effects are (1) fragile diabetes and (2) pancreatic insufficiency. I use a Tandem t-slim pump and a Dexcom G7 CGM to manage diabetes and use Creon for enzyme supplements.

Thanks, Matt.
So many things to consider. And that I have had this dilation for 12 years with no change which is good, but is it just getting me closer to the eventuality? The doctor's tumor board was split down the middle that I should have the surgery, and that I should continue monitoring. I appreciate your input!

Happy to help. For me, the thing that helped was that I knew it was not going to get better and time is not always your friend, so I moved forward with the surgery. Wouldn't change anything and still have a fairly normal life.

Where was your surgery, by the way?

It was at Cleveland Clinic Main Campus. The one thing that they mentioned that helped was while the surgery is important, the aftercare is more so since it changes your endocrine/digestion processes. They have all been super supportive of me over the past 6 years.

I have a Main Duct IPMN with dilation at 15mm and it is dispersed throughout. I’m told only treatment is a Total Pancreatectomy. At 73 I am choosing to monitor it with interval MRCPs. No symptoms. Any insights on experience would be welcome.

I am 72 and have also chosen to monitor my 8mm dilation. I have had 2 ERCP's with no changes.
I have MRI's with contrast every 6 months. At this point I mentally can't consider the Whipple.
Multiple opinions, and varied.
Do you have an IPMN?