Topic: In a quandary with "presumed" CCA diagnosis...
Hello Online "Friends-to-be!"
I feel very fortunate to have found this wonderful site - so full of valuable information, wise counsel and emotional support!
My husband became ill in mid-December of 2012...The presenting symptom was intense generalized itching so the family doctor ordered various routine blood tests (including liver enzymes, etc.) on Dec. 21. His office then closed for the Christmas holidays so we were unable to receive the results...However, the itching progressed to an unbearable level and then I noticed mild jaundice. By then it was New Years Day so off to a Walk-In Clinic where the physician fortunately realized his degree of illness, "painless obstructive jaundice" and immediately ordered a CT Scan along with appropriate blood work (liver enzymes, bilirubin level, etc.) The scan showed a 2 cm. stricture in the distal end of the common bile duct. An ERCP was performed but was unsuccessful in terms of placing a stent. Since we live in Prince Edward Island, Canada's smallest province (population only 140,000), there is no Interventional Radiologist. This necessitated going out-of-province for a PTC (Percutaneous Transhepatic Cholangiography) with plastic stent placement. The procedure was successful and helped resolve the jaundice and itching. Two biliary brushing biopsies were taken during the PTC but came back "untestable" from the Lab. The Liver Surgeon/Liver Oncologist met with us and indicated he felt the stricture was probably CCA and that a pancreatoduodenectomy would therefore be in order. We returned home "to think about it" and my husband did well for about a week with the stent. However, severe chills/fever, nausea/vomiting set in so back to New Brunswick...It was determined that the stent was not working optimally so the Interventional Radiologist placed a larger plastic stent. More biopsies were taken during this procedure and then the Gastroenterologist performed an Endoscopy with Ultrasound and he too, took some biopsies. Unfortunately, all of the biopsies have come back "untestable" or "inconclusive." Hence, the quandary! Massive surgery is being recommended on the suspicion of Cholangiocarcinoma but without a definitive diagnosis, we are somewhat hesitant to proceed. We realize CCA is notoriously difficult to diagnose but are wondering if any other tests might help clinch the diagnosis? I have read about PET Scans and am curious as to whether this would be advisable and helpful in confirming the presence of cancer cells in the common bile duct...At the moment, my husband is feeling relatively well, just somewhat tired from the two recent trips to the New Brunswick Hospital and the various procedures performed. We understand that the stricture is, in all probability, cancer but it would be reassuring to know for certain before submitting to such radical surgery. The Liver Surgeon said he feels 97% confident it is CCA...but what if my husband is in the other 3% where it is benign? What to do??? Compounding the situation somewhat is my chronic illness where I am only out of bed a few hours a day. My husband is MY "caretaker" but now he has acute illness and facing extensive surgery...Certainly not a good situation when a household has both chronic and now acute illness! I am very concerned for my husband and of course, am wondering how I will be able to support him through the surgery and extended recovery period when I am incapacitated myself. The biggest issue currently though is how to proceed? Should we try more biopsies in the hope that they will be conclusive? Any other tests that would firm up the diagnosis? Any and all input will be greatly appreciated as we try to make informed decisions!
Thank you from Prince Edward Island, Canada!