@ashley2235 , How long has it been since your surgery? How often are they following up with CA19-9, ctDNA, and imaging?

My Whipple surgeon did not recommend a post-op MRI at the 4-week follow-up, as it "would only show the post-op changes in anatomy."

I'm glad the medical oncologist ordered one anyway, because it provided a clean baseline showing no visible cancer at the surgical site or surrounding areas. It helped make the next MRI 3 months later much more evident that the 1.3 cm mass at the original site was a change from prior. That's pretty fast regrowth, but understandable given no adjuvant chemo.

Similarly, CA19-9 had gone down to 12 one month post-op. Several weeks later it was 33 (different lab, part of a follow-up with my PCP). I didn't freak out; it was still below ULN, and I just assumed it was a return to normal levels, maybe related to the different lab, or worst-case, related to some of the post-op dietary adjustment difficulties I was having. It was about 6 weeks from that, at the same point the MRI discovered my 1.3 cm mass, that CA19-9 reached 77.

They did do an immediate EUS biopsy right after that, which came back negative. Since my ctDNA tests were also coming back negative, the tumor board recommended waiting 6 weeks and following up with another MRI. At that point, CA19-9 was 277, the tumor was 2 cm, radiation was not an option, and the surgeon wanted at least 3 months of demonstrated control on chemo before he would reconsider surgery.

When I asked my oncologist if I should restart chemo immediately, he said it was an option, but "didn't think it would change the outcome" (I really wish I had dug deeper into that statement at the time!) and that he didn't recommend treating while there was no definitive evidence of disease.

When I asked if a PET scan could help speed up the diagnosis, I got some long answer that wound up with me not getting a PET scan. I do believe it would have shown FDG uptake and been a tie-breaker vote leading to earlier chemo.

I'm only a "statistical sample of one" but that's the data that guides how I now interpret data and decisions related to my own body, tumor, and their treatment.