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

Almost my story exactly. Sorry to hear it. We can all take different lessons from our own outcomes, but this is one reason I encourage people (at least people at risk) to get their CA19-9 tested while they're healthy. They'll know their own normal so they can recognize a deviation.

Personally, I have become more suspicious of Total Neoadjuvant Therapy before Whipple and none after if patient is NED, and almost absolutely opposed to "wait and see" for anything.

I do wish you the best. I'm now 15 months out from my recurrence being suspected on MRI, and 12 months into chemo on Gem+Cis+Abraxane and doing pretty well, all things considered, but believe my team and I missed several chances for a much better outcome.

Yes, I am also very interested in why no post surgical chemo is recommended if clear margins and nodes. Studies have shown benefit. I pressed my surgical team and oncologist for chemo and was told by all that there is no need.

I'm happy for all the people that can have surgery..my husband has been told by Dr Tom Clancy at Dana Farber that surgery isn't possible because of vessel involvement
Wish I could find a surgeon that does operate on patients with vessel involvement
And I hope his oncologist can find a good treatment for his tumor
I love reading the positive outcomes from people on this site❤️

I'm also considered inoperable due to blood vessel involvement. To be honest, I'm OK with that. And I've had two cancer surgeries (not pancan) previously, plus a ridiculous number of other surgeries over the years including two open-heart surgeries, so I'm not opposed to surgery per se. The Whipple is a very arduous procedure, as others on this board have described, and it doesn't always remove all the cancer. Pancreatic cancer is notoriously virulent, and it doesn't take many cells to cause a recurrence by secretly planting themselves somewhere undetected and then growing willy-nilly. I appreciate your frustration, though, and I hope your husband responds well to chemo!

Thank you for your reply..it does seem to be true that the Whipple may not completely cure a person.
I liked a comment I saw yesterday "let's make pancreatic cancer a chronic disease "
I hope and pray that the treatments my husband can now get will keep his cancer a chronic disease 🙏🏽✝️💞

I'm not a medical professional.

After reading hundreds of stories, my sense is that chemo may be necessary before and after - potentially for as long as it takes. There are too many relating surgical bed recurrence, mets in various related and unrelated areas.

My broad recommendation is to push for chemo for as long as you can stand it.

@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.

@bceg1969 and @ncteacher ,

Have either of you consulted with or done research into Dr. Christopher Wolfgang at NY Langone (formerly of Johns Hopkins)?

He is supposedly one of the best when it comes to surgery with complicated vein/artery involvement.

(I qualify that with some understanding that it pertains to "locally advanced" tumors, not those with distant metastases.)

I haven't consulted with anyone on that. I was diagnosed as stage 4 because the surgeon who did the staging laparoscopy saw flat lesions in my abdomen. He had already rejected surgery because of the blood vessel involvement, but the lesions put the icing on the cake. As a result, surgery and radiation are out for me; the cancer is too widespread. Fortunately, so far I'm responding well to chemo, so hopefully that'll hold things off for a good long while.

I had surgery 6 months ago. I have CT every 3 months, CA19 every month, but do not have ctDNA done. That has never been mentioned. Or rather, my oncologist said it was not covered by insurance. So never discussed again. My CA19 was 12 prior to surgery, 44 upon discharge, and has since been dropping to a level of 16. My oncologist wanted CA19 every 3 months with CT, but I said I want it every month, as it has been a good indicator for me. I return to Mayo on March 18th for CT. I had a lung micronodule at 5 months that I am trying to not worry about, as none of the clinicians seem to be.