Intro – ERCP @ Duke tomorrow
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Hi Carol,
Welcome to the site. Sorry that you had to find us all here but glad that you’ve joined as you are in the bets place for support and help and i know you will get loads of each from everyone here. Glad to hear that you have an app with Duke and I so hope that you will get some good news there about this. Being proactive with this cancer is essential and if we can help then we will so please just ask and we’ll do what we can.
Please let us know how everything goes for you, we are here for you.
My best wishes to you,
Gavin
Carol,
Welcome to these boards and I hope they help you find some answers and some friendships. Fallling through the cracks is not an option, so I’m glad you are very proactive and got an appt with Duke so quickly.
I did not have symptoms either…nothing that would indicate something so awful growing inside of me, and my tumor was found at stage T2-b by accident. That’s the nature of this cancer…..as it grows silently.
Leet us know how the appt at Duke goes …we’ll be here.
Julie T.
Dearest Carol –
Welcome to the best family no one really wants to be a part of. It’s one of the unfortunate things with this cancer that it has very little symptoms until the later stages. My husband was 3b when diagnosed with no real symptoms until he turned yellow but that was it. Only turned yellow.
follow the links that Lainy gave you and you will definitely be on good track for getting a start on this disease. When they do the ERCP they will most likely place a stent – metal or plastic – each which have there own sets of problems but you will have to wade through. Biggest is monitoring for infection. It is a possibility that you will have a brushing done for a biopsy but often these biopsies are false negative so take whatever they tell you with a grain of salt.
The other thing that we suggest a lot is second third or even fourth opinions. And make sure you have docs that have dealt with many cases of CC. This is such a rare disease that not all docs see it with any regularity. You want to look at a major cancer center and you can find a list of quite a few of those on this website.
Good luck and keep us posted on how you do.KrisV
Dear Carol, welcome to the best place to be for CC support but sorry you had to find us. I am glad you got in to Duke and anxiously awaiting the results. Please make sure that whatever you do you are with an Oncologist who is experienced in CC. “Falling through the cracks” of an office is not acceptable. You need to have an experienced TEAM around you to get this job done. You are not alone as you just acquired a huge family right here. Please keep us updated on your progress. Here are some sights you may find valuable:
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/I felt my health was generally good, discovered some blood in urine and very loose stool, loss of appetite and tinge of yellow skin some days. I got myself to my primary care Dr. within 3 days and he sent me to gastro Dr. within 10 days. CT and MRI of abdomen produced diagnosis of Cholangiocarcinoma of biliary tract. They said they would schedule ERCP procedure, however that seems to have fallen through the cracks with their office staff. I called Duke and got records sent to them and got appt. in 2 days for the following week. I am 71 years old and have a fairly active life walking my dogs, cooking and taking care of my home. I no longer see blood in my urine and I have got the loose stool under control with a small amount of plain full fat yogurt for probiotic daily. I have no pain and feel generally good, except for lack of appetite. I am puzzled by the diagnosis and hope for the best so that I can be here to care for my dogs as long as possible.
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