I'm back: increasing CA19-9 was accurate indicator of recurrence.

I had posted back in mid-November that my CA19-9 levels had been increasing and I was experiencing back pains at night, but there was no detectable circulating tumor DNA (ctDNA). To re-cap, I was diagnosed with borderline pancreatic cancer in July 2022 and had 12 rounds of FOLFIRINOX followed by a Whipple surgery at the end of January 2023. Due to the increasing CA19-9 and back pains, my oncologist ordered a PET scan at the end of December which revealed "areas of concern" in the surgical bed and in several mediastinal lymph nodes. My primary oncologist recommended either (1) restart chemotherapy or (2) wait and see. I got a second opinion from a second oncologist and decided at the time that I would wait in see. The ctDNA was still undetectable and evidence of recurrence was not definitive. It was also suggested that a more informed decision on treatment options could be made after recurrence was detected and we knew where the recurrence was located (local vs metastatic among other things). I was also wishfully thinking that maybe the increased CA19-9 and back pains and stomach aches I was experiencing could be due to pancreatitis, an ulcer or anything besides recurrence. That was wishful thinking. A CT scan on January 31 confirmed local recurrence at the site of surgery. I am now scheduled to restart chemotherapy next Tuesday. The decision for chemotherapy as opposed to radiation was based on concerns for possible metastasis to distal sites. I will be receiving Gemcitabine, Cisplatin and Durvalumab (an immune checkpoint inhibitor). This regimen has been shown to have some efficacy in treating biliary tract cancers, which is what my cancer was re-diagnosed as following pathological analysis of my resected tumor.

In retrospect, would I have done things differently? What I know now is that the increase in CA19-9, which started back in July (it first went from 7 to 28 to 72 to 120 and is now at 157 six months later), was in fact due to recurrence. I also now know that my back pains and stomach aches were probably due to the recurring cancer pressing on nerves, but also possibly due to stress and anxiety that I had been experiencing during the time of uncertainty. I did meet with a cancer therapist to address some of that, which was very helpful. I also now know the ctDNA test was not as sensitive as CA19-9, despite my and my care-giver's expectations. All together, I think I actually have taken the right course. I had six months with some discomfort, but mostly lived my life pretty fully. Restarting chemotherapy is going to be a drag, and there is no guarantee that it is going to be effective or make me feel any better. I will probably feel worse. Are outcomes going to be any different had I started treatments six months ago? We will never know. I can only hope for the best! Thanks for listening. Maybe what I describe will be of some use to others who may be going through the same thing.