Abort chemo Rx & go straight to surgery while I am still Stage 1?

My thoughts - I am not a medical professional.

This disease is sneaky and hard to beat - if me, I would relocate to one of the handful of centers of excellence with specific focus in pancreatic cancer. As an example, Mayo Rochester is one of these, but Mayo Jacksonville is not. MSKCC and John's Hopkins and MD Anderson are, I believe.

Quick note on CA 19-9. It is a secondary, sort of tracking blood market test. Any number above either 34 or 37 (manufacturer dependent) may mean pancreatic cancer, but there is no "better than" relationship if the number is lower than those numbers.

Thanks for providing the list of hospitals; I might need them in the future if it returns. I’m going to add a comment on the CA19-9 statement. Lower is better even under the 37 limit and the reason why is well I’m 4 mos since my last chemo session and 1 year past my distal surgery; my last marker was at 6 and as of yesterday it just quadrupled to 24, yet I’m still in the “acceptable” range so this is why lower the better. No comment from my oncologist on this but I just hope my next bloodwork doesn’t show any more increases like this one.

I did not think the CA 19-9 test works as you described ... here are a couple of informative links. I am not a medical professional.

Are you inferring that because my ca19-9 is increasing even though it’s under 37 is indicative that something is growing? Is the ca19-9 suppose to stay the same or decrease after surgery/chemo?

@mnewland99 , I'm not inferring disease is present at all, just saying to keep an eye on things, because...

Some people have pancreatic tumors that don't shed CA19-9 at all, and other people have much higher CA19-9 from inflammation or many other benign causes.

I advocate for frequent enough testing of CA19-9 to know what YOUR normal is, and it takes several tests to establish that. When you see a _deviation_ from YOUR normal, that's an indication _something_ should be checked out.

I also don't know how long you went between tests (with the results of 6 and then 24). Quadrupling could be significant, depending on the timeframe. One more test could tell you if your last one was just a glitch or if things are trending to where they would exceed 34/37 any time soon. Try to make sure you get all testing done at the same lab to ensure consistency and comparability.

The paranoia on my part comes solely from my own experience with recurrence after Whipple. Slowly rising (but at increasing rates) of CA19-9 was actually the earliest indicator my cancer was coming back, beating out the MRI, EUS biopsy, and 3 fancy ctDNA tests. It's cheap, easy, and a reasonable indicator in the absence of other more detailed/invasive/expensive tests.

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Too late to edit my previous post, but MRI indicated my recurrence when CA19-9 had hit 77, but reconfirmed it 7 weeks later when it was larger and CA19-9 his 279. The first met was actually present on that MRI, but wasn't caught until a re-review a month later, when CA19-9 hit 667. The rate of increase was remarkable, and the cost of not addressing it earlier has been very high. 🙁

Screenshot of my CA19-9 history is attached. The first blue dot is the first normal reading since my diagnosis, which was right after Whipple. Everything to the left of that was my time on Folfirinox. (Missing some data that was done at other labs.) Next 4 dots to the right, up to the peak, were before treatment began Decreasing trend on the right is after 20 rounds of chemo.

In this video from 2021, Dr. Katz shows a graph from 2013 showing how CA19-9 at diagnosis corresponded to overall survival in patients who underwent surgery for "resectable" PC. His point is that the higher CA19-9 levels are statistically more suggestive of (or proxies for) "invisibly metastatic" cancer for which surgery on the primary tumor does little good. Once the horses are out of the barn, you know...?

Here was my situation when diagnosed in 2012. The CT showed the tumor in the head of the pancreas very close to the portal vein. The surgeon said I had a small window of opportunity and he was prepared to do the Whipple the next morning-a Saturday. I was at a high -volume center in NYC and my surgeon at that time had done over 1500 Whipple surgeries and in addition performed liver transplants so he was trained as a vascular surgeon and proficient at handling vascular involvement.

When I was open up and examined, it was noted the tumor was in contact with the portal vein. A portal vein resection was done and the surgical pathology revealed the tumor had penetrated completely through the vascular wall. A week after the Whipple, a post surgical CT was done and found metastatic disease was present. It was not seen two weeks prior because it was too small to be detected and the resolution of a CT in 2012 was about 4-5mm whereas today it is 1.3mm. So because I just had surgery, I had to wait 8 weeks to heal to begin chemotherapy. That meant no treatment of the metastatic disease and to make things even worse, when I did get chemo, I had no response to the first chemo regimen.

Had I been in the position to have neoadjuvant chemo and assuming I would have received Folfirinox, it likely would have addressed the micrometastatic disease when it is easier to treat. Neoadjuvant chemo has shown better outcomes. I could not do neoadjuvant even if was available in 2012 because the compression of the bile duct and the close proximity of the tumor to the portal vein made the situation “time is of the essence”. I was fortunate in the outcome of now being an 11 year survivor and N.E.D. after having stage IV disease. It required 46 cycles of adjuvant chemo with 24 cycles of full-dose Folfirinox and 22 cycles of 5-FU/Leucovorin in alternating groups of six cycles every 15 days for 24 months with no pause. It makes me wonder if I would have needed that much chemo to knock out the disease and achieve N.E.D. had neoadjuvant chemo been a possibility for me?

I had a distal pancreatectomy and splenectomy in July 2022, and cancer was found in the resected portion of the pancreas, but had not advanced anywhere else that was detectable. I had 12 cycles of Folferinox, and the cancer still ended up spreading to my liver. After six months of Gemzar/Abraxane, the liver tumor had still grown, and now there was lymph node involvement. Doctor stopped the Gemzar/Abraxane because it didn't seem to have an effect. I wonder if more chemo would have made a difference or not? I wonder how much time on a treatment is enough?