Topic: Informing patients and local physicians
Given the rarity of this cancer, too many local GI doc's, local oncologists, and local GP's simply are not aware of this cancer. But, this vital, initial contact sets the course of treatment for the patient. In order to fix this broken link, CCF is in the process of addressing the local community physicians with educational videos and general outreach via e-mail, conference attendances and other means of communication.
Patients and caregivers can aid this process by informing their treating physicians of this site and the resources available to all i.e. the biliary book (downloadable as well and free of charge in printed version,) the Mayo Research Project, the biliary emergency information card, the CCF International Patient Registry and all other pertinent information listed on our website. (Please know that we are working on refinement of several links.)
We are developing an updated version of the “Newly Diagnosed” section. Amongst other important information we will address the criteria for liver transplantations as well as the likely exclusion due to percutaneous biopsies/and or biopsies performed at the time of endoscopic ultrasound
As always, we encourage your input on all subjects.
Thanks and hugs,