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@becklynne1960

My CA 19 recently came back at 1277. I have had a PET scan and CT scan but nothing showed up. Does anyone know why my number would be so high with no cancer showing? It is very worrisome. I have been through chemo, radiation and surgery for pancreatic cancer.
Prayers for all.
Becky

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Replies to "My CA 19 recently came back at 1277. I have had a PET scan and CT..."

Sorry to hear about your elevated CA 19-9 result. If it were me, having already had those therapies, I would be all over my oncologist demanding additional evaluations. CA 19-9 and other cancer antigens are notoriously poor on initial diagnosis, but apparently pretty good at tracking disease progress. Re the scan results, my oncologist told me that CT scans can't identify any lesions that are smaller than 1 cm. I've also read less than 1.5 cm. The lesions also have to be 3D; that is, if they're very flat, the CT scan can't pick them up. In my case, I was given a laparoscopic visual check to stage my cancer the week after my biopsy came up positive. The surgeon said he could see flat lesions, but the CT scan didn't show them. So again, you might have new activity, but it's just too small for the CT scan to see.

Now, all that said, yes, there are a variety of noncancerous disorders that can elevate CA 19-9. I'm sure I'm not remembering them all, but they can include pancreatitis, liver disease, gallstones, and other things. I know this has been mentioned on the board before, so you might be able to find a more complete list. Anyway, my point remains: Since you've already had multiple treatments and the CA 19-9 is now elevated, I would really push for additional assessments to pin things down. Good luck!

becky,

I am not a medical professional.

My sense from reading thousands of threads:
- being treated at a center of excellence (ex: Mayo Rochester, MSK, Farber, MD Anderson) significantly increases you chance of recovery
- continuing chemo following Whipple is essential, although for reasons I don't understand (except for cost, or patient condition), this is not done

IMO, if you have high CA 19-9 following chemo and Whipple, I would review what it was prior, during chemo, before Whipple, after Whipple - then insist on restarting chemo until the high number can be evaluated through other means.