Introduction: CC Diagnosed in Canada Janaury 2015
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Sean….a warm welcome from me as well. Princess Margaret Hospital (Toronto) treats many Cholangiocarcinoma patients as well as conducts or participates in clinical research studies. I would advise you to contact their biliary oncologist as well as the radiologist.
Stay strong…you are doing everything right. Second opinions are considered standard at this time. Please keep us posted.
Hugs,
MarionDear Sean, welcome to the best place to be for CC support. As Julie mentioned we are big believers in 2nd and 3rd opinions, different eyes see different things. I too am glad you are considering Mayo Clinic (Rochester Minnesota). There are also some great Hospitals in NYC which may be closer for you. At the top of the page is a Search engine and just type in a word or 2 and what you are looking for should come up in quite a few older posts. In the meantime I am listing some good sites for you to peruse. Wishing you the very best and I do believe another opinion is the way to go. Please keep us updated on your progress.
Newly diagnosed:
http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
Free complimentary Book or e-mail download:
http://cholangiocarcinoma.org/news/foundation-resources/
Biliary drainage – stent information card
http://cholangiocarcinoma.org/biliary-emergency-information-card/
Register for a CURE
The International Cholangiocarcinoma Registry
http://cholangiocarcinoma.org/professionals/research/patient-registry/Sean,
Welcome to the CC Foundation website discussion boards. I don’t have a lot of info to share with you regarding trials , but there are some very knowledgable people on board here who will be posting soon, I”m sure. For now, I just wanted to say hello. It sounds like you have a pretty good handle on what CC is and you have or will be taking steps to get more opinions, which is what many of us here recommend. I am an ICC patient at Mayo, having had surgery a year ago (stage T2b)., so I will be very interested in what Mayo has to say for you. I hope that you will share that when you find out. anything.
Julie T.
Hello;;
My name is Sean Bellefontaine. I am 43 years old. In September, 2014, I was diagnosed with PPSC (Primary Sclerosing Cholangitis). This turned into a battle of Emergency Room visits and inpatient hospital stays. I believe I’ve had 10 inpatient stays which included 2 surgeries & 8 ERCP”s to date. In January, 2015, I was further informed that I’ve contracted Cholangiocarcinoma of the left biliary tree.
Last week, surgery was performed to resect the good side of my liver; this proved unsuccessful. As the carcinoma has now spread to the extrahaepatic bile duct & K/L biliary tree; plan B which was to embolize the portal vein was called off by the surgeons.
On March 18th, I have a clinic appointment that will lay out a plan for some type of remediation which I believe will constitute radiation & chemotherapy.
This disease seems to be very misunderstood with little information available. I’ve not seen much coming out of Canada. I will be sending medical records Internnatiionally (Mayo Clinic) for second opinions.
I would be ever grateful to hear from others on the discussion board that can ppoint me toward good information and where I can find information on experimental & clinical trials; worldwide but especially in Canada.
Many Thanks & look forward to talking with all of you.
Regards;
Sean Bellefontaine
Hallifax, Nova Scootiia, Canada
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