Thanks Gavin. This link was very informative!

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(4 replies, posted in Introductions!)

My husband was diagnosed in July. He is 67. Our primary physican sent us to UC in San Francisco. We saw Dr. Roberts, a transplant specialist at UCSF. After reviewing the CT scan done at our local hospital he thought he could operate. He hospitalized John that day. The first thing that needed to be done was to get his bilirubin count down so that they could operate. The next day they performed an ERCP trying to place a drain but were unsuccessful. The following day they did a laparoscopy to place the drain and do a needle biopsy and an ultrasound. The results showed that if wasn’t a primary liver cancer but originated in the bile duct, cholangiocarcinoma, and spread to his liver and two lymph nodes next to the liver. At this point Dr. Roberts said he couldn’t do the surgery.  However another doctor on the team, Dr. Corvera, said he thought it was a possibility. He ordered a PET scan that showed that the cancer had not spread past those two lymph nodes and that John was otherwise very healthy with no other disease.  In order to do the surgery they had to get his bilirubin count down to 5 or below. Dr. Corvera wanted the interventional radiologist to place an additional drain. The IR team was against placing another drain stating that it was “too risky”.  They sent John home on the July 30th with the hope that he could get his bilirubin down and gain back some of the weight he had lost in the hospital. They gave John an appointment to see Dr. Corvera two weeks from discharge and asked him to obtain a blood draw locally in one week and faxed the results to his clinic.
On August 4th he developed a fever and after being seen by the Emergency Room Doctor locally was sent by ambulance back to UCSF Parnassus. He stayed for three days getting antibiotics by IV. We did not see Dr. Corvera during this time, only the chief surgical resident whom we had been seeing regularly during his previous stay.
On August 15 we saw Dr. Corvera in his clinic and he was not very positive about the surgery but was willing to go ahead if John wanted. Since John’s bilirubin count was still high he said they would need to place 2-3 additional drains. In addition he would probably need a feeding tube to help him gain weight and get his nutrition levels up for the surgery.  When I reminded him that the IR doctors thought placing more drains was risky, he said “he could talk them into it”.  He would have to take out two-thirds of John’s liver, as well as reconstruct his bile ducts. The surgery was extensive and involved risks during and after.
John opted out of the surgical intervention, even though that is the only real cure. He decided to have a metal stent placed internally so he could get rid of the external drain. We were told that the placement of a mental stent precludes the option of surgery, but it was never explained why this was.
I wasn't happy with the way information was given at UCSF. I had to figure out the diagnosis of cholangiacarcinoma when they told me the biopsy showed Adenocarcinoma and I Googled it and that's when I first read about cholangiacarcinoma.
Although the stent relieved him of his symptoms, his appetite is poor, he has lost lots of weight even though I am giving him high protein shakes with all kinds of supplements. He is taking Essiac - a herbal supplement and different vitamins etc. His energy level is low as well. We are seeing a local oncologist who advises not to do anything as long as John is feeling okay and to wait until symptoms return to maybe do radiation to help shrink the tumor. Although my husband is aware of his condition, he is trying to stay optimistic and doesn't really want to discuss his cancer.
I am disappointed that this website has not updated their website under "alternative care" and "palliative care". I have been checking regularly for a few months but it keeps posting "coming soon". I gues I just need advice and guidance.
I am sorry my story is so long. It is hard to condense such a ordeal. For those of you who have stayed with me so far - thanks for listening.