Topic: Terrified and looking for support and answers
I am joining this site to try and find information for my Dad...and support for myself and my family. I will give you the progress here as quickly as I can.
In February, Dad who is 76 began having stomach pains. Had a prostate exam and biopsy to rule out cancer. No cancer found, but infection ensued from the hospital stay to his blood stream. Week in the hospital and sent home.
In March, still having stomach issues, of nausea, pain after eating. Dr. thinks gallbladder sends for testing. Ultrasound shows many stones and a dilated bile duct. Specialists comes in and does ERCP expecting to find trapped gall stone. No stone, but a stricture at the billary juncture of the common bile duct. Dr. places stent in stricture. Klatskin tumor suspected.
Dad sent home and two days after ERCP begins profusely bleeding from the bowels. ER visit and week in hospital finds that the ERCP cut must have bleed open. Bleeding stops.
Specialist does 2nd ERCP and does brushings. Brushings negative. Second CT and MRCP, no tumor or mass seen. 3rd ERCP ultrasound inside. NO tumor, mass or lymph nodes seen. 4th ERCP done with Spyglass, no tumor seen but area of concern looks ulcerated under Spyglass and biopsy of inside the stricture taken. Biopsy negative.
After consultation will all three specialists it is decided that Dad should have surgery at a major Ohio hospital to remove the Bile duct, gallbladder and possible resection.
Subsequent testing of CT with dye shows scattered lymph nodules in the peritoneum of the stomach lining. Dr.s are not sure if this is metastisis or an infection left from previous infection. Surgery is scheduled for bile duct, gallbladder and possible resection.
Dad fails cardiac pretesting and must be cleared heart wise before proceeding.
We are at our wits end, having believed four times now that he is okay. The doctor who did the Spyglass procedure felt that his gall bladder was so full of stones that is was pulling down on the bile duct and creating the stricture that way and possibly causing some bile to gather there and create the thickening seen.
In the last two weeks Dad is increasingly depressed, some sickness and vomitting of bile, usually after taking pills like antibiotics. His appetite is good and since the stent he eats basically anything included greasy things that used to bother him.
In the three months since this started he lost around 25-30 pounds but remains steady or slightly gaining since. He has never been jaundiced. His liver enzymes were moderately elevated but came back down after stent. His tumor marker was slightly elevated and the doctors felt it was inconclusive.
Please tell me you informed opinion of what this sounds like. Is it likely to be bile duct cancer after all the negatives? What are the chances of survival when there is no "mass" to biopsy? We are seeing specialists at the University of Cincinnati who are skilled at liver transplant, but I have no experience knowing what they know about this cancer.
My family is very close and Dad was not sick until February. Any help, advice or support is greatly appreciated. I am so glad I found you all.