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!

2 (edited by PCL1029 Thu, 21 Feb 2013 04:56:02)

Re: In a quandary with "presumed" CCA diagnosis...

Hi,
Yes, PET can tell you about the activity of the tumor site,that is how active the tumor it is. But you are in Canada,I don't known how you can get PET done unless your GP order one for you. see link below

http://www.cholangiocarcinoma.org/punbb … 365#p47365

Difficulty in detecting CCA by ERCP brushing is not uncommon;MRCP can do a better job but cannot have sample taken; Many members had surgery without 100% sure about their situation in extrahepatic CCA like distal CCA.Our member ELI in Canada will response to  you when he sees your request and I am sure he will give you suggestions of how to deal with the health systems in Canada.
The best hospital for CCA is The Princess Margaret Hospital in Toronto for Canada.
Surgery is the only possible cure for CCA and distal CCA has a better chance than other CCA in successful outcome.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: In a quandary with "presumed" CCA diagnosis...

Dear Brackley, welcome to our extraordinary family but sorry you had to find us. I am so sorry you are in this horrible situation but would like to give you a different approach since the diagnosis is not complete yet. It is very important for you to make family and  friends a valuable team, you will need them all. BUT the most important thing is to try and take each day at a time, I know, been there and done that. My Teddy was in to his 4th year, he survived 5 1/2 and passed 2 years ago at 78. Anyhew, 1 year before he passed I was DX with my very own rare Cancer. If you can believe, it is more rare then CC. Called a GIST Tumor and it was  10cm. Got DX, went in the next day, had it removed and have not thought twice about it since except for CT Scans every 6 months. My point is we are so much more powerful than we think and when needed we pull on this extra energy and will power and somehow we get through. I have to say it sure sounds like how Teddy started with that infernal itching so deep. You are doing the right things and in the beginning it is a wait and see game. BTW, I found that cold showers and a cream called Sarna really helped with Teddy's itching. Sometimes he used little ice bags as well. Hang in, be strong as you can and we are all with you...you are NOT alone. You never know how strong you are until "strong" is the only choice you have!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: In a quandary with "presumed" CCA diagnosis...

Hi Brackley,

Welcome to the site. So sorry that you had to find us all and I am sorry to hear about your husband. But I am glad that you have joined in with us all here as you are in the right place for support and help, and I know you will get tons of both from the members here. So please, keep coming back here. Ask questions, vent away if need be and we will all be here for you.

I can't really help too much about the Canadian system as I am in Scotland, but I am sure that some of our Canadian members will be along soon to offer more insight into how things work in Canada. I realise how frightening all of this is for you both, but you are not alone in this now. We are here with you and we care.

My best wishes to you and your husband,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: In a quandary with "presumed" CCA diagnosis...

Hi Brackley,

I just wanted to chime in and welcome you to this site. I don't know how things go in Canada, so I don't have any advice for you other than keep fighting the good fight and never give up hope. I am sorry things are so difficult for you in that you have a chronic illness. My heart goes out to both of you. Life is so unfair sometimes. God bless you both.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: In a quandary with "presumed" CCA diagnosis...

Hi Brackley,

Welcome to the site. I am sorry that you had to find us.

My wife and I faced the same quandary two years ago when my wife got diagnosed. Your husband's case and my wife's case are very similar. My wife had a tight stricture in the distal portion of the common bile duct. She had an ERCP done where they place a plastic stent and took a brushing biopsy. The biopsy came back as "suspicious for adenocarcinoma" but inconclusive. MRI (MRCP) and CT scans were inconclusive as well. Endoscopic ultrasound was the final test that tipped the balance for us. The doctor who did the test said: I'm pretty sure it's CC; even if I'm wrong, you don't want to take any chances. That statement sealed the deal for us. We agreed to do the surgery even though the CC diagnosis wasn't 100% certain. They confirmed CC after the surgery, when they did a full exam of the tumor.

Note that positive biopsy is not required to diagnose CC. If the stricture looks like CC on all other tests, the doctors can recommend surgery even though positive biopsy is missing. This is standard practice when dealing with extrahepatic CC.

Percy's (PCL1029) suggestion to arrange a PET scan is a good one. If the stricture lights up on the PET scan, that would be a very conclusive result that confirms cancer. The problem is, what if the PET scan ends up negative? A negative PET doesn't rule out CC. It can be a "false negative" result.

PET scan coverage varies province by province. Ontario (our province) doesn't cover PET. Quebec does. I don't know about coverage in PEI. You have to ask your oncologist. If PEI doesn't cover them, can you explore private option?

If you decide to go for more biopsies, ask your doctors about SpyGlass biopsy. The procedure is similar to brushing biopsy but they use a different device. SpyGlass may be able to obtain a positive sample where brushing biopsy fails.

Identification of cholangiocarcinoma by using the Spyglass Spyscope system
http://www.ncbi.nlm.nih.gov/pubmed/22178463

I don't know if and where SpyGlass is available in Canada. Our doctors here in Ottawa never mentioned it. I learned about it on my own later on.

Aside from PET scan and SpyGlass, the only other option I can think of is a consultation at a high volume hospital that sees many CC cases. The Princess Margaret Hospital in Toronto is very good. My wife had her surgery here in Ottawa, at The Ottawa Hospital. It's also very good.

Best wishes,
Eli

Re: In a quandary with "presumed" CCA diagnosis...

Brackley....I too am sorry to hear of all you are going through.  Brackley, I am wondering:  there is a tumor and the tumor is infringing on your husband's well being to the point that he has to have a stent.  Would it not be best to open to the possibility of tumor removal may it be benign or not? 
I am sending all my love your way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: In a quandary with "presumed" CCA diagnosis...

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~

Re: In a quandary with "presumed" CCA diagnosis...

Not sure I can add much to the conversation but I wanted to welcome you to this site of loving, caring, and knowledgeable people and I am sorry you had reason to join us.

Sending good thoughts your way!
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.