You are not alone with regard to retrieve information to help to monitor or look for solutions for treatment further done the road.
I am one of the patient of this disease for 54 months and one of the moderator the foundation ask me to volunteer for.
I did put up a fair amount of past and current medical and cancer related topics and some of the most recent development about treating this disease. The problem lies on, unless you keep an eye on this message board everyday to read the "UPDATED",marked by the orange yellow indicators on the sections of related message board. If not,After 2-3 days, the old messages will be moved downward by new message which people who commented on that subject and the original message will be out of sight .
This is a problem I noticed long time ago,; the only solution is to treat some common and useful messages as a "sticky note" and it will always appear at the top of the discussion forum. So far there is only one such sticky note by our founder Stacie on one of the message forum.
Even I have difficulty sometimes to find my own messages or other people's messagea date or two after I research and find out the answer and try to reponse to that message.(ie:after I read about a new patient's message request, like I am new and what steps should I take next; or what have you heard about immunolotherapy ,clinical trials ,targeted therapy agents ,common chemotherapy question and the trend of future treatments etc.and some specific the patient asked for) . I put those up and revised as frequently as possible.THE REASON TO DO THIS is simple, I am a patient. the more I keep myself updated about this disease, the better chance I can survive longer and with a better quality of life and i do not mind to share with others.
The problem for other patients or caregivers is that they may not want to know about medical related messages but only emotional supports; therefore the need may not support the use of create a "sticky note" that always appear on the top or the message board forum that you want to search.
My suggestion is to try to read "the system treatment" for CCA to have a sense of past ,current and future outlook for this disease; then you can read " the treatment triangle" about other ways to deal with this cancer; also if you are interest about scans ,"ultra sound"is the search word .
If you have intrahepatic liver tumor, you can read "my case study" or if you have extrahepatic CCA, you should read one of the best message board member called" Eli " about his research for CCA treatment for his wife.And Gavin,our speciaL moderator in Scotland too.
Just use the search function above(ie: next to the user list) and type in what you want to know I think that is one way for a new member who want to know about this cancer medically in general in a ONE SITTING reads it all situation.
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.