Out of my paranoia for CCA I asked for CA19-9 test and it’s been over a week and doctor never called. Nurse called and said it’s “ out of range” “elevated” but nothing she as a GI nurse can Interpret and to differ to Hepatology dpt. Naturally am worried about this now, I had an mrcp 2 months ago and they had found narrowing but no stricture or blockages. I thought I was in the clear but now this elevated test has got me really worried? Anyone have experience with this elevation? I am flaring with my UC right now but I don’t know if that would impact the result, of course no doctor gets back to me to provide insight so I’m just sitting here with my thoughts
Sorry to hear that you haven’t had feedback from your test. Honestly though, I’d take that as a good thing. If it was seriously elevated, you’d be contacted very quickly. It’s true that cholangiocarcinoma is a risk with PSC, but if my memory serves me correctly, its about 1 in 5 who get it. It is hard to detect, until its grown significantly. Aside from periodic blood tests, or a yearly MRI or some test, there is nothing that can be done to stop the disease. The best course is to focus on what you can control, good diet, exercise, living life. Personally I’ve chosen to put my effort into those areas, and ignore PSC until it becomes to the point where I can’t ignore it any longer. Each case is different put for me this has been working for 14 years or so.
Have you or anybody else on here had an elevated ca 19-9 with psc or anything else ?
I never have had an elevated CA 19-9. But it is possible to have elevated markers with a benign condition. A very high range could indicate a malignancy, but at this point, you are not even sure what the exact range is, is that correct?
A nurse told me it was at 220 for whatever standard range people use . I am hoping it could be inflammation from flaring UC… new PSC diagnosis with my enzymes climbing… so stressed