new member
- This topic has 18 replies, 8 voices, and was last updated 11 years, 1 month ago by
.
-
Posts
-
Hi Shellina!
My husband’s situation is rather similar to that of your husband!
His severe generalized itching (pruritis) began in December 2012 and was followed eventually by jaundice. Blood tests showed elevated bilirubin levels and abnormal liver enzyme readings. A CT Scan revealed a stricture in the distal region of the common bile duct which explained the painless obstructive jaundice. An ERCP was attempted but failed. A subsequent PTC was successful and a plastic stent was placed (with external biliary drainage bag.). This alleviated the jaundice…at least temporarily. However, the stent became blocked a few weeks later and had to be replaced by PTC. During the various hospitalizations, 3 sets of biopsies were taken (between 6-9 samples.). Some of the samples were via biliary brushings during PTC (Interventional Radiologist) and others were tissue (by forceps) during Endoscopy with Ultrasound by the Gastroenterologist. Unfortunately, none of the biopsies confirmed cancer. All samples were “unreadable” or “inconclusive.” At least 4 Specialists all visualized the stricture during the intraductal ultrasound…and all agreed it looked like cancer. The Liver Oncology Surgeon has clinically diagnosed Cholangiocarcinoma based on the clinical picture, history, symptoms, CT Scan appearance, etc.etc. but a definitive, confirmatory diagnosis has not been possible. This apparently is not unusual with Cholangiocarcinoma – diagnosis is often a challenge! The Surgeon indicated they are about 97% sure it is cancer but the “proof” will not be available until more samples are tested at the Lab after extensive surgery. My husband is scheduled for a “pancreatoduodenectomy” (Whipple procedure) in just 5 days on March 18, 2013. He is feeling well since the last stent replacement so undergoing radical surgery (when not 100 % sure it is cancer) makes it even more difficult…
I can empathize with the questions you have and the uncertainty you are experiencing…
Please write again as I found responses to my initial questions last month very helpful from this wonderful, caring group!
Best wishes from the east coast of Canada all the way to you and your husband in California!
Warm regards,
~Judy~
Shellina…welcome. You are correct, brushings rarely come back as positive hence the physicians will take in account all other symptoms, including results of scans and blood for the official diagnoses of CC. Biopsies rule out a possible liver transplantation therefore, at this point, your physician may hold off from moving forward with this procedure.
As Lainy has mentioned, you would want to obtain an opinion from a physician/center treating a high volume of CC patients. Has any type of therapy been recommended?
Please, stay with us – we care.
Hugs,
MarionDear Shellina, welcome to our remarkable family, and sorry you had to find us. Where is your huband being treated? You want to make sure that he is at a Hospital/ONC who has had experience with CC, something is not setting right with me. My Teddy also had external plastic stents that were replaced about every 6 weeks. It became routine. Are they doing anything else for him? Did the Jaundice leave? Are you near any larger Medical Facilities? Well you had more questions so lay it on us. I think my very first thought is to get to a reputable place where they treat CC. Ask away, that is why we are here.
Hello. I have been reading the message boards for a couple of months now and finally decided that I need to post. My husband was diagnosed with bile duct cancer. It all started last September with pruritis. His quack of a doctor told him to drink more water and use plenty of sunscreen. I knew this wasn’t right and sent him back to tell the doctor that he needed a blood test. The lab work revealed high LFT’s. His bilirubin was 2.5 and his alkaline phosphatase was 727. This news sent us for an ultrasound and CT scan. Both revealed dilated bile ducts. Next we were sent to a surgeon (gall bladder removal), and 2 different Gastroenterologists. Finally we ended up in the ER in early December with jaundice and a bilirubin count over 20. They attempted ERCP and PTC at the first hospital with no success. He was then transferred to another hospital where they were able to do the PTC and put in a plastic sent and external biliary drain. FYI the gall bladder was never removed since that was not the problem. Now we go every 6 weeks to have the bag replaced. They never have gotten a biopsy which shows cancer cells. However, they tell us that it is cholangiocarcinoma and that it is very difficult to get a positive biopsy with a brushing. His oncologist told us that he is 99% sure it is CC. Has anyone else had this experience with a biopsy. I read online that biliary brushing is only about 35% effective.
I have more questions. But,will start with this. Thanks for any and all info you can give me.
- The forum ‘Introductions!’ is closed to new topics and replies.