I am 56 years old and have become a member of the not so desirable club. Diagnosed in Sept 08, I was to have surgery....opened up and lymph nodes removed. Three out of seven are positive.
I have a wierd presentation. This was found incidentally with no symptoms. I had a physical and my liver function tests were elevated. AST and ALT were in the 50s and my alkaline phos..was 398. I went through all of the tests and then the dreaded words. You have a tumor in the bile duct. I saw a surgeon and he thought it to be operable. It is a small tumor and according to the tests there is no spread to organs or lymph nodes. But to the surgeon's suprise there were three nodes when he lifted the liver that he was going to remove....that was the plan to remove half of the liver. So he cleaned out the nodes and closed me back up. I was told that because the disease was "systemic"....the protocol is to zap with chemo. I saw one oncologist who painted a very bleak picture. I am a nurse practitoner and didn't like what he had to say....so....of we go to Tulsa to the Cancer Treatment Centers of America. I was told there that the "right" thing was done. I know the stats! But nothing and I mean nothing about this has been normal. First of all I have no symptoms....no jaundice, no nausea, no change in bowel, no weight loss, no itchininess. Nada! No mets to organs. The results of the pathology are actually inconclusive. In fact, the doc at CTCA said he has never seen anything like it. My tumor markers are normal. And in fact....before I had any treatment my liver function tests improved. AST and ALT are now normal and my alk phos dropped to 240. I want this tumor out. The surgeon said that the tumor was much smaller than the CT showed. In fact it is less than 2 cm. He said that if I respond to chemo he would consider taking the tumor out. So why the bleep didn't he do so to begin with?
I am interested in hearing from survivor's. I am going to beat this son of a b. I am appalled that there are few clinical trials because this is such a rare cancer.
Sorry for the long intro....but I know that there is hope out there. Attitude is half the battle.....I am going full force!