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Elevated CA-19-9 for over 2 years
After an appendectomy (due to appendicitis), they noticed whitish-gray mucus in my abdomen. My initial thought was PMP (Appendix cancer), but after pathology's second opinion, it was ruled out. However, my CA-19-9 was 695. Lab work, MRI, and CT did not show any cause for the elevated CA-19-9, but after about four months it was down to about 215. I am now three years out and have had annual CA-19-9 blood work. I ranged between 169 and 191, so still significantly elevated with no identified cause. Doctor concluded it is just "my normal".
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@davidgg, I can imagine that an elevated CA-19-9 concerns you. It sounds like you and your doctors have made thorough investigations. Are you worried that something is being missed? Have you considered getting a second opinion?
It has crossed my mind. I don’t have any symptoms and it could be something that just has not manifested clinically. There is not much research on this topic. From what I can tell, for the majority of reported cases, within two years the underlying cause presents. I think we are sort of in a wait and see mode now.
If you are considering a second opinion at Mayo Clinic, here's more information on how to get started: http://mayocl.in/1mtmR63
God sakes get a second opinion ! I still have no symptoms ms but my pancreatic cancer has already metastasized to my lungs. My CA19-9 is 241.
PLEASE get that second opinion!