Ten Years

Hello everyone, today is the tenth anniversary of the discovery of my intrhepatic (hilar) tumor. I had abdominal pain after an evening of deep fried chicken wings and draft beer, prompting a visit to my doctor. He said textbook gallbladder problem and ordered an ultrasound and drew blood. a week later I heard him mention cholangiocarcinoma, only to later find the ultrasound technician took the time to write a report on this intrahepatic neoplasm and called it “suspected cholangiocarcinoma ” a hard few words for any medical professional to ignore. The doctor that ordered the ultrasound doubted this possibility, but recommended that I see a specialist. The specialist had an even better idea of how rarely this comes along, and honestly doubted it to be cc . He ordered an ERCP to be done, which they took a scraping of cells on the exterior of the tumor, being careful to not disturb the tumor too much. The cell scraping was reported to be “cyst like cells, more like a polyp cell” he said, he added often there are these cells on the outside often and cancer cells inside. He referred a surgeon who he called “the best” , sounded like the man for me, dr. Henderson at the cleveland clinic . I contacted his office, and the system there was quick and efficient, things moved quickly, initial consult, cat scan, second visit, pre op tests, I had my liver resection surgery 1/26/06 and all went well, I went home on day 5 and became constipated by pain meds, and began using high grade cannabis for pain, and sleep . I went through many scans and blood tests for many years, all has gone well, one small lump along my scar about the size of a quarter. The past few years I have had bilary restriction issues at the site the bile duct was sewn together, it builds scar tissue inside becoming smaller as time goes on. I also have PSC so my bile duct has a scar like condition throughout, and it becomes inflamed at times, and I see light stools and dark urine and I know things aren’t moving right. It may be small bile stones restricting and then passing, or it may be the duct becoming inflamed, I take a anti-inflammatory drug for my bad shoulder called Meloxicam, it seems to open my bile duct up and keep things flowing well so far. I would be sure, anyone considering a stent in their bile duct consider anti inflammatory drugs before going for a stent. I have followed many cases on this board, especially long term survivors like 32 coupe , Bob had 16 years I believe when he last posted and he was having problems with a stent being clogged and infection . In the long run not just a re-occurrence can bring us down. I have been in control of my case for a while now, I believe a stent is a desparate act to open up a bile duct, I hope for continued success and just reading stories and going back years and following what others have done can educate you about what works. I believe the whole problem begins with irritation and inflammation and scarring condition in the tissues where liver bile flows and sits. I am a retired mechanic, not a doctor, but there is relevence and I always try to figure things out that go wrong. Theories can be right or wrong, but these doctors seem to have many. All of us are a little different but many things are the same. My advise to anyone dealing with this disease is keep a level head, don’t let your emotions run you. listen to your doctors, don’t see just one. Two heads are always better than one. Take care of yourself, eat well, get your rest, avoid stress. Even if you never had cc, this is a recipe for a longer life, take care, Pat P.S. woo hoo