How often you test the CA19-9. Monthly ,quarterly? What were those 3 CT scan results since then( you said every 3-4 month will have CT scan and lab )
We need to look At the trend especially almost 11 months now.
If you just had no treatment after surgery as compare to have adjuvant chemotherapy, or radiation , the story will be different .( looking back into your message, you said you have no adjuvant treatment, it is ok if the doctor decided as such,because adjuvant therapy is still a debatable subject inthe medical field)
CA19-9 is for monitoring the adjuvant treatment's effectiveness or. The progress of the disease.( what were those four month results of the CA19-9 AND the ALK phosphorus result)
Sometimes depend on the timing of the treatment and the CA19-9 lab drawn, it may go higher during the dying of the cancer cells still are in the the blood system, but will trending lower if the treatment works over that 11month period.
Ask the oncology to explain to you so you will have the knowledge to follow through and understand your own CCA. I do believe each of the CCA patient condition is different and therefore comparing one patient's case to a similar one may not be the best way to understand about your OWN CCA.
CA19-9 =\>129 is indicative of CCA.based on sensitivity and specificity when first diagnosis in general.
Intrahepatic CCA 's value ,in general ,will much less the extra hepatic CCA.( but after I read your message, may I ask you how do you know you have INTRAHEPTIC CCA? Or just because the tumor is in the liver and you guessed so.Did the doctor just said you have cholangiocarcinoma ,period. You said the surgeon said he had to reach down to the duodenum ? And this made me think otherwise that your tumor start from the hepatic ducts or the common bile duct.
CAN YOU provide the CA19-9 results over the last 12 months and what adjuvant chemotherapy or radiation you have received so far?
Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.