Thank you, Marion, PCL1029 and Gavin for pointing Jim in AMMF's direction.
We are indeed the UK's only cholangiocarcinoma charity - lots of info on the website, and we will always try to find out answers/info for those who need it ...
To underline what has been said for Jim - here in the UK (under the NHS) you are entitled to a second opinion with a named surgeon and/or oncologist of your choice. Treatment should always be under the care of an MDT knowledgeable and experienced in CC, and definitely should be at major hospital rather than locally.
Treatments and drugs used in the UK and the US may differ because, as I understand it, in the US and Canada, clinicians are allowed to prescribe fairly much what they like without an evidence base - something which we aren't allowed to do in the UK as NICE dictates things on hard evidence...with properly formulated clinical trials - which leaves little room for manoeuvre.
This can be very frustrating for us here, for example in the case of liver transplantation for CC - we see the good results being achieved in the US (albeit with a stringent protocol and small numbers), and many of our consultants and researchers have visited the Mayo to learn about this first hand, and come away convinced by it ... Yet it is not available at all to anyone diagnosed with CC.
AMMF's website doesn't have discussion boards, but we do have a very active Facebook page which everyone is welcome to become involved with...
As always, many thanks to the wonderful CCF for all they do - and over on this side of the Atlantic, we're doing our best too!
With positive thoughts for all.