Lots of questions. Best to write them down in advance. Ask doc if you can record the session on your phone. You almost always get your longest, most informative session at your first appointment, and get so wrapped up it's hard to simultaneously write down the answers.
Sample questions, not all in logical order:
0) How many Whipple procedures does this surgeon perform each year? PanCan.org can help answer that question. There is a ton of data out there showing better outcomes with experienced surgeons at high-volume centers. That also includes the OR staff and recovery center.
1) Will they be doing one last CT/MRI shortly before the surgery just to get a current picture of the anatomy (vein/artery involvement), and possible spread to lymph nodes or elsewhere?
2) Will they do it open, or laparascopically, with or without robot assistance?
3) Will they start with a "diagnostic laparoscopy" where they first just go in through a few tiny holes and look for other metastases? I think this is a normal protocol. If they find a lot of other bad stuff they didn't see on MRI, they may abort early and not perform the Whipple, so as to not put you through unnecessary agony.
4) If they do find other unfavorable spread, what is their threshold for aborting the Whipple? How much else can they find and successfully address without aborting?
5) If they do the full Whipple, can they send you home with a prescription for Creon or other enzymes, so you don't have to endure weeks of digestive discomfort waiting for your 1-month follow-up visit?
6) If they do the full Whipple, will they preserve enough tissue to send out for multiple analyses, including sequencing for a Signatera (DNA) test that they can use during follow-up to look at microscopic levels whether your cancer is returning?
7) Do they plan on a "pylorus preserving" Whipple? (saving the pylorus valve below your stomach)
8) I'm not sure if you have any specific genetic mutations that predisposed you to pancreatic cancer, but if you do... What are the chances the part of your pancreas that remains after surgery will also turn malignant later in life? If that is likely, is it worth taking out your entire pancreas instead of just the head?
9) If you are not already insulin-dependent diabetic, you might become insulin-dependent after the surgery. Ask if there is a possibility of them harvesting islet cells from your pancreas and transplanting them into your liver to reduce or avoid the diabetic outcome.
10) How often will they follow up after surgery with CA19-9, Signatera, and imaging?
11) Is there a plan for "adjuvant" chemo (after the surgery) regardless of the pathology report? If so, which regimen, and starting when?
I hope this is a good start, and wish you the best with it all!
Thank you for all the information. I learned so much about questions to ask. Wonderfully helpful. Thank you.