From https://www.sciencedirect.com/topics/medicine-and-dentistry/ca-19-9-antigen#:~:text=Interference%20of%20heterophilic%20antibodies%20causing,of%20CA%2D19%2D9.
"Elevated CA-19-9 levels usually precede the radiographic appearance of recurrent disease, but confirmation of disease progression should be pursued with imaging studies and/or biopsy. CA-19-9 can be elevated in many types of gastrointestinal cancer, such as colorectal cancer, esophageal cancer, and hepatocellular carcinoma. Apart from cancer, elevated levels may also occur in pancreatitis, cirrhosis, and diseases of the bile ducts. It can be elevated in people with obstruction of the bile duct. In patients who lack the Lewis antigen (a blood type protein on red blood cells), which is about 10% of the Caucasian population, CA-19-9 is not expressed even in those with large tumors. This is due to deficiency of the fucosyltransferase enzyme that is needed to produce CA-19-9 as well as the Lewis antigen. The use of a combined index of serum CA-19-9 and CEA (CA-19-9+[CEA×40]) has also been proposed for screening of cholangiocarcinoma.
"Interference of heterophilic antibodies causing false positive CA-19-9 results has been documented, and usually treating the specimen with heterophilic antibody-blocking agents can eliminate such interference. Patients with acute or chronic pancreatitis may also have elevated levels of CA-19-9. In addition, pulmonary diseases may also elevate CA-19-9 levels. Liver cirrhosis, Crohn’s disease, and benign gastrointestinal diseases can also increase CA-19-9 levels."
I'm not a medical professional; I just googled for reasons why CA 19-9 could be elevated. There are a bunch. That's what makes CA 19-9 a tricky tool to use for definitive diagnosis. On the other hand, I've always heard that the CA results are more reliable to track disease/treatment progress once you have a firm diagnosis. That's why, if my CA 19-9 were starting to rise, I would be pestering my oncologist for more assessment to pin down why.
Wow that’s a very thorough answer! My imaging, CT, ultrasound, and PET scans show nothing but a soft tissue area around my celiac and hepatic arteries which radiologists read as scar tissue from surgery and procedures I had afterwards to repair a leaking fistula adjacent to the pancreas. I’m currently waiting for results from my ctDNA test. I did look up why marker can rise and read the usual which includes pancreatitis which I had after the leaky fistula and all I can say is you will know without a doubt when you have pancreatitis!! I didn’t seem to have any of the others but right now it’s a wait and see stage so I’m gearing up and pestering my primary to order more frequent antigen/markers since the nurse practitioners at my oncologist think I’m being over reactive. If you wait until you actually see the image of the tumor before you really do any aggressive hunting then you’ve already put yourself into the next stage. I see why difficult to detect pancreatic cancer in stage 1. But I’m being proactive and just changed to an insurance where I can go to hopefully one of the facilities with the best providers.