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CA 19-9 high but no malignancy

Pancreatic Cancer | Last Active: Sep 24, 2023 | Replies (16)

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@topaz17

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.

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Replies to "Been having pain right side and center of abdomen for 2 years. First occasionally but recently..."

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!