Hi friends

Hi, infodude. I’m sad to hear that your brother is having to walk this road, but I’m glad that you came out of “guest” status.

Regarding your first question, please take the following with a huge grain of salt. I am not a doctor, and am just basing the following opinion on what I’ve read/heard with this cancer. I think you’ll be hard-pressed to find a surgeon that will operate with such a large tumor and bone metastasis. That’s not to say that if you ask enough surgeons, you won’t find one that will cut on the liver. Surgeons like to cut, so chances are that you can find one willing to cut. But your brother may wish to weigh the costs against the potential benefits. I don’t know if it’s extrehepatic or intrahepatic bile duct cancer, but neither surgical option is routine. Rather, the surgeries are quite extreme, and carry a degree of risk. At the same time, since the cancer has metastasized, it carries greater challenges as the surgery won’t address the metastasis, and the metastasis can just travel back to the resected liver and “reinfect it.” So, it’s possible that the surgical benefits may be small, and the chances of recurrence are large. That’s not to say that I would not investigate further – I would personally speak with several surgeons about whether or not to proceed with surgery. (and I would limit these discussions to surgeons that have regular experience with bile duct cancer – not surgeons that have only seen 1-2 cases in their career – this means go to the comprehensive cancer centers for 2nd/3rd/4th opinions)

I believe JeffG has had some good success with going after bone mets – hopefully he’ll stop by soon and offer some good advice on possible treatment options.

Regarding your second question – this one can be incredibly tricky and frustrating. Are you close with your brother? I am incredibly close to my sister, and would not have any issues with just asking her point-blank if I may bring her as much research that I can find. Maybe your relationship with your brother is the same? I might try that approach just to get a good feel for whether he is open to you forwarding him research. Regardless, I would try my best to respect your brother’s treatment decisions. Quite honestly, there is no “right” answer with cholangio – there’s not even a standard of care for treatment. So, whatever road your brother decides to take is the right one, even if he decides against taking it to the limit.

In this day and age, you would think that if you just go to the right hospital, and take an aggressive approach, you can beat this thing. But we’re still not there yet. God bless, I wish we were….

You may have seen my posting, but my Husband Butch just had a liver resection at UPMC – had 3/4 of his liver removed. The surgeon was Dr. Gamblin, assisted by Dr. Marsh. We went to Mayo, but they did a laproscopy and found lymph node involvement in the diaphragm area. They stopped the operation, and when we got home , I wrote to other places. UPMC responded, and they have done the operation. So – your family should write them a letter – they will ask for copies of the reports, scans, etc. They won’t know until they try. I did tell Dr. Gamlin last week that I would be telling people on this website about him, so it is fine to tell him that you saw it here!

Joyce C.