CA 19-9 high but no malignancy

Been having pain right side and center of abdomen for 2 years. First occasionally but recently constant with pinching pain and feeling like I was punched in the back lower rib area. Dr did a CA-19 test just to rule out anything and my numbers came back at 4,800. He didn't believe it and it was repeated 3 weeks later. The number is now 20,000. Had CT and Endoscopic U ultrasound and they say ducts, pancreas and Gall bladder look good. Has anyone ever had such high numbers, but nothing found. My Dr is worried, and I am panicking.

My cancer was found due to a similar pain but was lower right side. Turned out that it was pain from liver lesions.
You need a second opinion.
Those numbers are indicative of something. The sooner you know what it is you can get on with treating it!

One thing you might ask about is a laparoscopic evaluation of your abdomen. My first oncologist told me that some metastatic lesions are very flat, so they don't show up on CT scans because they're not three-dimensional. When I had my staging laparscopy in April, the surgeon said he saw at least one lesion elsewhere from my pancreas, so I'm stage 4. I just had my latest round of CTs last Friday, and my liver and spleen are listed as "unremarkable." That tells me that I still may have flat lesions there, but that the CT scanner can't pick them up. (I plan to ask about them at my appointment Thursday.)

Re the CA 19-9, it seems like these readings can vary from person to person; some have low ones, some high. In general, the CA 19-9 isn't reliable for diagnosis, but is one way to track treatment progress. I would push for more scans and a laparoscopy with a hepatopancreaticbiliary (HPB) surgeon who is skilled at identifying and working with pancreatic cancer. You might also want to get CDs of your scans and seek a second opinion or even a third opinion at another clinic. The sooner you get definitive info, the sooner you can start working on treatment. Best wishes to you!

Thank you. He did mention about seeing an
oncologist, so I may pursue that route.

topaz,

Please follow up with a different team ASAP, preferably at a pancreatic center of excellence.

@topaz17, just checking in. Have you sought an appointment with an oncologist? Any update?

@edios1

This is so helpful to me. Thank you. I had a Whipple in March 2025, and successful removal of my pancreatic tumor. Following surgery, though, my CA 19-9 levels were higher than they'd been, and have kept climbing. Current reading is 196 -- much lower than your mom's; but the trajectory has been steadily upward, even while on a regimen of gemcitabine, and now a new regimen: 5F-U with irinotecan. Based on your post, I've just checked my B-Complex vitamins, and noted that Biotin is included. So I'll definitely be checking what happens if I d/c that one vitamin. Very grateful to have your posting about this. It may not make a difference in my case, as my two Signatera tests since surgery registered "abnormal" results (though the second was lower than the first), but it's tremendous to have something to try here. Like your mom, I'm basically feeling well and doing well, so the CA 19-9 rise has been baffling -- especially in the absence of radiological evidence of disease. All the best to you and your mom!

nbcesq

@nbcesq I don't want to be a wet blanket or bearer of bad news but climbing CA19-9 levels should be watched. In March 2025, my husband's PET scan showed no evidence of disease but the CA19-9 levels climbed slowly from normal to 40s and then 70s even with Gem-Abraxane. The onco continued with chemo and scans. In a PET scan in May, the cancer showed up. Sometimes the cancer is so 'small' that it cannot be picked up in a scan. I hope for yours it's the supplements but just keep an eye on things. All the best.

@joiedevivre Thank you so much for this post. Yes, this is precisely the understanding I've had thus far -- that we're in a waiting game, just needing to allow the cancer to metastasize to the point where it can be detected on radiological scans. So I'm continuing on a new chemo regimen now, and will repeat the PET scan in December. Even if nothing shows up then, I know that the fact that the CA 19-9 levels have climbed after surgery and chemo correlates with a high likelihood of metastasis and shorter life expectancy. I just don't want to fail to take account of any other possible explanations for the CA 19-9 rise. Has your husband managed to survive thus far -- and if so, is he receiving radiology in addition to chemo? My very best wishes to you and to him.

@nbcesq My husband suffered from radiotherapy; it did nothing to get rid of the local recurrence at the resected edge of the pancreas (he had distal pancreatectomy in Dec 2023) but caused all kinds of problems to his gastrointestinal system. 5 weeks in hospital, 10 days of which in ICU (3 major surgeries!). Miraculously, he recovered sufficiently for chemo to restart 4 weeks after discharge. Markers now at 2800+. Cancer has spread to the peritoneum although the bit at the resected edge remained stable. He is on Folfirinox with a twist (or so onco says). He only had 3 sessions of Folfirinox before he was switched to Gem-Abr which controlled his cancer for 15 months. Onco reckons the cancer has now developed a resistance to Gem-Abr.
I am sure everyone in this forum will agree Pancreatic cancer sucks! But the trick is to stay alive and relatively well and pray for a breakthrough with all the clinical trials.