Actually we have had 3 opinions at this point from 3 different hospitals including Shands and Moffitt Cancer Center. I have been on via email as far away as Germany and Japan looking for options and keep coming up empty. Frustrating to say the least.

Thanks for the suggestions/thoughts.

Admittedly I have no medical training, so bear with my obvious ignorance, but I can't get an answer to this question anywhere and it's driving me absolutely nuts.  Anyone who can explain it in laymans terms PLEASE BY ALL MEANS DO!

I do not understand why cholangiocarcinoma is not able to be surgically removed at stage 3......I'm sure there's a reason, but nobody can explain it to me so far. What I mean is this......understood there is a tumor, got that. Understood there is backup of the bile and jaundice is a byproduct of that........have spent seems like the last month since we found out about my mother in law trying to learn everything I can about cholangiocarcinoma and here's what I've been told by the doctors
I am abbreviating here, so bear with me.....doctors don't seem to like my direct questions so far, so they aren't getting answered and it driving me NUTS!


Doctor " There is no way we can do surgery since we could not control the bleeding"
My Question:  In an age where we can remove a human heart, keep blood flowing mechanically while a new donor heart is installed, why is this a problem?

Doctor " If we remove the tumor there is too great a risk"
My Question: " At Stage 3/4 is it not worth a good element of risk in many people's mind"? Is anyone doing late stage portal vein resectioning in the US?


Doctor " If we removed a section there would be nothing to reattach the portal vein to"
My Question: I've found plenty of scientific research studies, especially in Japan that lead me to believe there is both man made portal vein material available and indications of quite a bit of portal vein resection. with, in one case a 5.9% operative dx rate..........compared to the alternative that sounds like PRETTY FREAKIN' GOOD ODDS TO ME!

Guess I'm grasping at straws maybe, but with all of the medical science out there is there not a single facility doing surgery on more advanced stages of CC? 

Below is one of several examples I've found from Japan.
http://www.pubmedcentral.nih.gov/articl … id=1356151

and after you go through the science and methodology, pay particular attention to the last 1 1/2 paragraphs where it says:

"Criticism is that most of surgeries in their series were palliative or R2 resection. However, Todoroki et al27 described that adjuvant radiotherapy for patients with stage IV hilar cholangiocarcinoma who underwent R1 resections significantly prolonged survival compared with resection alone. Thus, adjuvant intraoperative and/or postoperative radiotherapy may have potential survival benefit when macroscopically curative resection is possible. Now we are planning adjuvant radiotherapy for locally advanced disease.

In conclusion, combined portal vein and liver resection for hilar cholangiocarcinoma can be performed with acceptable mortality. Approximately one third of the resected portal veins have not been infiltrated microscopically; however, without portal vein resection, the dissection plane will be cancer-positive in most cases. Although portal vein invasion has a negative impact on survival, combined portal vein and liver resection can offer long-term survival to some patients with advanced hilar cholangiocarcinoma who were previously thought to have inoperable disease."

I'm one of those lucky guys to have a mother in law who is absolutely wonderful.  Best a guy could ask for and an incredible grandmother to our two children age 5 and 2. Unfortunately we just got the news a few days ago about her cholangiocarcinoma. Couldn't happen to a nicer person and we are not ready to give up or let her go.

I found the site and have been reading everything I can find, everywhere, trying to understand exactly what is happening to her, and what, if any options may be out there for her. I have found more in the first hour here than I have in the past 2 days of searching everywhere else online.

Thank you