I hope the "they" you refer to is at a pancreatic center of excellence.

I've not had a total pancreatectomy, but wish I did. My post-Whipple recurrence was at the original surgical site. If I'd had the entire pancreas removed, there would have been no issues with margins and no pancreas tissue to turn malignant afterward.

When my recurrence was first discovered, one surgeon said he could remove the rest of my pancreas, but wanted me to do some chemo first. I talked to another surgeon a few weeks later. He would have removed it immediately, but discovered mets on the scan and ruled me out.

Without a pancreas, you'll definitely be dependent on enzymes and insulin for the rest of your life. I already was, so I figured there was nothing to lose. Enzymes & insulin aren't cheap, but are usually covered by insurance, and are very manageable compared to a lifetime of chemo (on top of enzymes and insulin).

I haven't read any recent/modern studies on Whipple vs "repeat Whipple/revision" vs total pancreatectomy. I got the impression from older studies that it may have been a wash -- no obvious conclusions supporting one approach over the other. (Disclaimer: I have no medical training, and only remember scanning one paper about it.)

There *might* be less difficulty reconnecting your plumbing if they're not trying to preserve part of a pancreas. Worth asking about complications and options.

I guess the big difference is how confident they are the cancer is limited to your pancreas. The surgical mindset seems to be aimed at sparing the patient a complicated surgery and recovery if there's a good chance of disease spread anyway. I'd let them amputate my head if it had a high chance of eliminating cancer from my future.

If you do have the surgery, make sure they save enough tissue to have cells available in case there's a future treatment option that uses them. If you appear clean for a few months after the surgery, you *might* qualify for the mRNA vaccine trial at MSK and a few other sites.

If there is spread after the surgery, or if you opt out of the surgery, I recommend investigating other clinical trials for the various immunotherapy and targeted therapy treatments as soon as possible.

Hope this helps, and I hope you'll share whatever else you learn. Wishing you the best!!!

Thank you for responding, my husband and I are so nervous but just talked to dr and have no other choice. Having another ct scan there might be a block to the main artery so will have to see. I definitely will share all of my treatment plans and the success and problems. Thank you so much

An arterial blockage - caused by the pancreatic cancer?

Are you at a center of excellence? Can you be admitted to one - relocate if necessary. If possible please do this.

I have a ct scan on Monday to look at that artery.
I feel confident at the Cleveland Clinic.
Have you had removal of the pancreas

I think I'm in the same situation as you, but maybe a little worse. I meet with a surgeon on Nov 17th to discuss partial removal of my liver as I have several new tumors, but all located in the right lobe of my liver as well as a new tumor in what's left of my pancreas. I do take enzymes already, but only pills to manage the diabetes which I know will change to insulin after surgery.