@happyjack , I'm glad your doctor wants to talk some more before jumping into surgery. I don't recall if you had PET scan or other imaging to search for metastasis to other areas; if there are mets, that usually rules out (and spares you from) a fairly major surgery.

If you are getting surgery, consider the hospital's record in the GI specialty and particularly this surgeon's reputation and number of procedures. Pancan.org can help you assess that. It's not just the Whipple that's a surgical challenge, but the next week (at least) of monitoring for leaks and other complications. The hospital GI recovery floor and staff should also have substantial experience in dealing with Whipple patients. If not, you may wish to consider a more established "Center of Excellence" hospital for pancreatic cancer.

If you do get surgery:

1) Ask them to save as much tissue as possible. It will be handy to have if you need it tested or cloned later for a clinical trial.

2a) Ask them to send some of the tissue directly to Tempus for next-generation sequencing (DNA testing) to identify mutations in the tissue. PanCan.org can help pay for this as part of their KYT (Know Your Tumor) program. This will help outline potential post-surgery treatments for you without the delay of starting later.

2b) There will almost definitely be some type of "adjuvant" (after surgery) treatment; likely chemo, radiation, or both. But they would likely wait until you're fully recovered from surgery (6-8 weeks) before starting. Ask them if there's a clinical trial (such as vaccine trials) you can get into first instead of going the harsh chemo route. They may not have trials within their institution, but ask them to look outside as well. The AMPLIFY-7P study might be one option, depending on what's revealed by DNA testing of your tumor.

3) Ask them to send some of the tissue directly to Natera Corp. for construction of a "Signatera" test personalized to your tumor's DNA. This enables them to use and repeat a simple blood test later down the road to see if cancer (Minimal Residual Disease) has come back or monitor treatment effectiveness over time if it has.

4) Expect about a week in the hospital, and a couple days of feeling like you've been punched in the gut. All other blood parameters being normal, they will probably require you to poop or at least pass gas before discharge, to be sure your bowels are returning to normal function.

5) Ask for an enzyme prescription before you go home. With half your pancreas gone, you'll have challenges digesting food normally. Fats may be the most difficult, but that's sometimes the first comfort food a patient resorts to when going home. If you're seeing greasy, orange stool (steatorrhea, kind of like diarrhea) after a bowel movement, that's a sign you're not digesting fats sufficiently. It sucks to suffer for a month and wait for follow-up before a doctor tells you of this problem, so just ask them to send you home with enough enzymes to try for a week or two to help balance out the problem.

6) Depending on how much pancreas they take, you may also become diabetic (similar to Type 1, not producing enough insulin to compensate for sugars you eat). Make sure to ask them about monitoring and managing this. Instead of having to poke your finger multiple times per day, endocrinologists sometimes have "trial" or "demo" CGMs (Continuous Glucos Monitors) you can attach to your arm and monitor 24/7 via an app on your phone for 7-10 days. The Dexcom G6 (and now G7) have served me well.

7) Plan on taking it easy for at least 6 weeks after the surgery. It's not an easy recovery. Sometimes the digestive issues might surprise you, including sudden wakeups in the middle of the night. Sleep disruption does not help with recovery! You might also want to buy a pack of adult diapers, just in case...

I hope this helps. Wishing you the best with it all!