Glad to be of help as always and thanks loads for bringing up the specialist map as well for you folks in the USA as well. I totally agree with what you say re patients and the importance of having surgeons, oncs and everyone really that is involved in a patients med team being experienced in treating, dealing with and diagnosing people with CC. As you say, the larger major treatment centres will be best for people to go to find people with that experience and knowledge etc.
For newcomers to the boards who might not know as well, we have some threads and boards that are also of help.
Thank you as always in bringing important medical research to our community’s attention.
This abstract is yet another showing evidence that cholangiocarcinoma patients have better outcomes when treated at a major cancer center rather than a community health facility. It provides evidence that patients seen at major cancer hospitals have better surgical outcomes, for example.
When first diagnosed, it is important to ask whether the doctors diagnosing and treating you have recognized experience with this rare and complex cancer. You can ask how many cholangiocarcinoma patients they are treating, for example. If your doctors are saying, “Gee, I have only seen 2-3 of these cases in the last decade,” or as one of my doctors answered, “Well, you know, Mary, your cancer is really, really rare,” then it is important that you find an expert in cholangiocarcinoma to add to your medical team.
The Cholangiocarcinoma Foundation has a new tool to help you look for expert doctors and facilities. Here is the link:
Trends in the Incidence, Treatment and Outcomes of Patients with Intrahepatic Cholangiocarcinoma in the USA: Facility Type is Associated with Margin Status, Use of Lymphadenectomy and Overall Survival.