1

(18 replies, posted in Introductions!)

Heartfelt thanks to the latest three Moderators, Marions, Randi & Pam who have posted such kind and encouraging messages!  You have all eased some of my anxiety and for that, I am most grateful!

Hugs to All,

Judy <3

2

(18 replies, posted in Introductions!)

Lainy, thank you for your latest post! 

The surgery will be at the Moncton Hospital in Moncton, New Brunswick.  (NB is one of Canada's Maritime Provinces.  We are from Prince Edward Island, Canada's smallest province - also a Maritime Province, along with Nova Scotia.)

To travel to New Brunswick, we go across the Confederation Bridge, the world's longest bridge over ice-covered waters!  It's a 9 mile crossing! 

The surgeon mentioned that all my husband's nutritional needs will be met for the first week by the feeding tube.

My husband is a more relaxed personality type than I am which is a good thing!  However, he was just looking for a sleeping pill as he can't sleep...there have been several episodes recently where he's been awakened by nightmares so I know he is anxious too...

I'll stay in touch...and thanks!

3

(18 replies, posted in Introductions!)

Why "Thank You" Lainy!!!! 

I wrote to possibly help Shellina...so what a pleasant surprise to see your thoughtful note to me!!!  smile   

You must have read my mind...very concerned about the upcoming surgery!  The surgeon said the operation will be 8+ hours...and the hospitalization will be 2-4 weeks if all goes well...The surgery consent papers state a mortality rate of 5% and a major complication rate of 40%...No wonder I am anxious! 

The Liver Oncology Surgeon mentioned that the Anaesthesiologist will put an epidural in (for pain control) and this will stay in about 3 days.  A feeding tube will also be placed directly into the small intestine...

Thank you for mentioning about the epidural in case we weren't aware of it!  It should definitely help with pain management. 

I hope to update you all after March 18! 

With appreciation,

~Judy~

4

(18 replies, posted in Introductions!)

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~

What an amazing group of International individuals with a common bond!  I deeply appreciate the replies from Percy, Lainy, Gavin, Pamela, Eli & Marion.  Thank you all so much for your observations, very helpful information and kind, caring remarks!  Your compassion and concern is palpable! 

With heartfelt appreciation,
~Judy~

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!