Below is a reprint and revised message from this forum on 12/6/2011 for another patient.
Hope after reality sets in, you will become more inform about this disease.
As patients and caregivers ourselves,we need to be HOPEFUL ; we need to be knowledgeable ; we need to be current and we need to be REALISTIC and PRACTICAL in search of finding the" possible" cure for this disease.
(we don't have one right now except surgery;and less than 10% of patients qualified.but even after curative resection,recurrence is high ie:75%)
It is always my belief that ,as a patient myself, at this moment,because of the time frame is relatively short for us; the best way to help our CURRENT patients,like me and you, is to find and improve the current treatments that are working now(like chemotherapy and radiation treatment)); keep on researching and prepare by choosing the more effective treatments with less adverse reactions for the future in case of the CCA comes back or the current treatment is not working;and keep an eye on the new development of targeted therapy agents like Tarceva ,Nexavar, Avastin and Afinitor as well as radiology treatment options like RFA,Radioembolization and chemboembolization for intrahepatic CCA;,IMRT,(cyberknife),EBRT;SBRT;
PDT and proton therapy for extrahepatic CCA.
We should be vigilant and careful about all the info.we read on the internet. Despite all the advancement in treating this relatively silent cancer,We should not have FALSE expectation on treating this disease. One treatment working perfectly for one patient did not mean the same will apply to another patient due to the difference in patient's health status;the extent of the disease when discover;location,number and size of the tumor.
Conventional medical treatments are "evident-based "on research as well as clinical experiences; and I think that is why the oncologist said:
-"Cathy this is so new we have no long term data and even though we believe it was all removed there could be one micro cancer cell lurking, but we believe this is a cure. We need you to keep living to prove us right!!"
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.