Don't take this personally Wayne, but I have issues with some of your statements.
From what I've read on this site, the majority of patients have metasteses which rules them out out at step one. Therefore, I don't think oncs are hiding anything from patients.
When you read the stories on this site of long-term survivors, they seem to be primarily those who were detected before mets and were able to have resection(s). Even some of those were only temporarily successful. Clearly, a new liver into a body without mets provides the best chance for long term survival. But there just aren't that many of those. Us "old people over 60" who were not discovered until Stage IV are just SOL. This is one thing I am hoping the Registry will shed light on: just who are the long term survivors and what do they have in common.
I found a summary of the article but it looks like you need to spend $35 to get the full article. Maybe Gavin can find it for free somewhere. Here is the Reader's Digest version:
"We collected and analyzed data from 12 large-volume transplant centers in the United States. These centers met the inclusion criteria of treating 3 or more patients with perihilar cholangiocarcinoma using neoadjuvant therapy, followed by liver transplantation, from 1993 to 2010 (n = 287 total patients). Center-specific protocols and medical charts were reviewed on-site."
"The patients completed external radiation (99%), brachytherapy (75%), radiosensitizing therapy (98%), and/or maintenance chemotherapy (65%). Seventy-one patients dropped out before liver transplantation (rate, 11.5% in 3 months). Intent-to-treat survival rates were 68% and 53%, 2 and 5 years after therapy, respectively; post-transplant, recurrence-free survival rates were 78% and 65%, respectively. Patients outside the United Network of Organ Sharing criteria (those with tumor mass >3 cm, transperitoneal tumor biopsy, or metastatic disease) or with a prior malignancy had significantly shorter survival times (P < .001). There were no differences in outcomes among patients based on differences in surgical staging or brachytherapy. Although most patients came from 1 center (n = 193), the other 11 centers had similar survival times after therapy."
"Patients with perihilar cholangiocarcinoma who were treated with neoadjuvant therapy followed up by liver transplantation at 12 US centers had a 65% rate of recurrence-free survival after 5 years, showing this therapy to be highly effective. An 11.5% drop-out rate after 3.5 months of therapy indicates the appropriateness of the MELD exception. Rigorous selection is important for the continued success of this treatment."
Carefully read the last sentence. This is also referred to as "cherry picking" or "picking the low hanging fruit".
I could not find a reference to the 12 centers.
For those fortunate to have discovered cc while it was still small and had not metastasized, count your blessings. We are happy for you.