My Whipple at resectable/stage2 was done after 6 months of "Total Neoadjuvant" FOLFIRINOX, with Total/Neo meaning all the chemo before and none after. Intraoperative and post-op pathology confirmed cancer-free margins in the pancreas and 22 lymph nodes.

The recurrence afterward, from nothing on a 1-month MRI to 2 cm on MRI 3 months later, with mets to abdomen shortly after that, were a real kick in the gut.

Since the largest and first-noted recurrence was at the surgical site (where remnant pancreas was reconnected to jejunum), it is more likely the recurrence began there rather than as missed MRD micrometastases elsewhere in the abdomen, I think...

Nevertheless, adjuvant chemo (after the Whipple) *might* have killed any distant MRD mets and slowed the growth rate of my new primary tumor enough to react and resect before it metastasized.

As noted in a different thread, my team and I were misled by low CA19-9 levels, false negative DNA tests (Signatera and Galleri), and a false negative on EUS biopsy despite MRI findings.

Two prominent surgeons have told me the intraoperative pathology is not perfect, and a negative margin is only negative in the areas they look. Some parts can be missed.

In hindsight, I would have begged for a total pancreatectomy/cholecystectomy/duodonemectomy (rather than Whipple) right after diagnosis. The biggest deterrents at the time were: 1) lack of knowledge; 2) urgency to get on a treatment plan in haste; 3) my 30-pound weight loss before the diagnosis. Although I was in great overall health, and much of the loss was from recent diet and exercise... I just had no buffer to lose more weight as you typically do after pancreas surgery; and 4) My care team strongly recommended the plan I took.

We'll never know whether the intraoperative pathology that found clear margins was actually wrong, or whether I really was cancer-free at the margin and the remnant pancreas simply turned cancerous right after the surgery. Since I have the ATM mutation which increases one's susceptibility to PC, it could have been the latter; i.e., whatever process led to the initial cancer in the head of my pancreas simply continued its work in the rest after surgery.

Long story short:
- We discovered my diabetes and need for insulin the same week we discovered my initial cancer.
- I've required enzymes since the Whipple.
- I would have required enzymes and insulin if they had taken my entire pancreas anyway.

- I'd rather live a long life dependent on enzymes and insulin that I can manage from home than live a shorter life dependent on enzymes and insulin accompanied by neuropathy- and nausea- and hair-loss-inducing chemotherapy that I have to travel and sit in a chair for.

In other words, I wish I had swung for the fence in my first at-bat and dealt with the adjuvant chemo & its effects afterward.

There's a very good, short debate between two prominent oncologists regarding surgery-first vs chemo-first here:

The Total Neoadjuvant (chemo first) approach is intended in part to help select appropriate candidates for surgery. If they assume the disease has already spread but can't be seen, they're ensuring you get a "full" treatment of chemo to kill any cells that might be hiding that could grow between recovering from surgery and starting adjuvant (post-op) chemo. If they see evidence of spread during neoadjuvant therapy, then they generally assume the surgery won't help you.

My thoughts on that are that they're treating a disease that *might* be there with a chemo regimen that *might* work instead of immediately using "the only cure" by taking out a tumor they can already see before it has any chance to spread.

Of course I'm not a doctor and I'm only a (statistically irrelevant) "sample of one", but these are questions and considerations anyone in a similar situation might want to raise with their care team at the outset.