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

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@markymarkfl

@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...?

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

I'm no expert on any of this, but the CA 19-9 appears to be used similarly to the CA-125, which is the tumor marker used in ovarian cancer cases. I've had the ovarian test since before I was first diagnosed in 2007. The CA tests are one tool that MDs use to diagnose and track cancer. I have always heard that these tests are not always accurate for diagnosis, but that they are much better at tracking disease and treatment progress. I can't explain why this is. Anyway, in my case, I had both CA tests--ovarian and pancreatic--before I was officially diagnosed with either disease. In the case of my ovarian, my highest level was a 35, I think. Normal range tops out at 35, so I "technically" was cancer free, except that the biopsy during surgery showed cancer, so the surgeon proceeded to debulking. After surgery, it fell to 18, and six rounds of chemo took it down to a range between 4.x and 8.x, where it's been ever since. In the case of my pancreatic, I had the CA 19-9 test prior to any scans or ultrasound, and it was already elevated to a level of 1736. So while the gastroenterologist didn't definitively say I had cancer based solely on that test, the reading was enough to hurry-up send me in for an EUS, which confirmed cancer via biopsy, and then the staging laparoscopy, which confirmed stage 4.