August 1, 2010 at 1:35 am #40422marionsModerator
Hello Sallypa and welcome to our site. I am sorry for the reasons of you having to find us however, I am happy that you have done so. I am also a strong believer in second (or more) opinions when being confronted with this cancer. As you may already know this cancer is considered to be of rare occurrence; although, when perusing this board it does not appear as that. Knowledge is power in that it will help you make informed decisions. And, one way of gaining such power is by learning as much as possible about this disease. This site can play an intricate part in just that. The members of this board are extremely helpful and caring and are always willing to help you. Their responses to your questions are based on their own experiences and on what they have learned so far. They also will support, console, and guide you along. Additionally, the many links offered in the various categories will be of great help to you. It is always important to gather all medical records including, doctorJuly 31, 2010 at 9:55 pm #40421jemimaMember
I was in your situation in February when my mum was diagnosed and never having heard of CC either (not many people have of course) but I found this website such a source of information, advice and comfort and I am sure that you will too.
Gem/cisplatin is the standard chemotherapy combination for CC. If you could tell us where you are then I am sure there will be someone who can either recommend someone locally or nationally who you can go to for a second opinion. In this disease it is so much better to go to a doctor who specialises in CC.
My mum is about to start gem/cis next week 6 months after diagnosis but we went for three opinions from different surgeons and unfortunately they all said no but we are hoping that the chemo might shrink the tumour enough to make it an option later.
Sending you my thoughts and best wishes
JemimaJuly 31, 2010 at 9:06 pm #3842sallypaMember
hello, i just found this website. until last week i had never heard of cholangiocarcinoma. my sister was diagnosed with the disease on wednesday. she has a 5 cm tumor on her liver that has encassed the left hepatic vein and there is a partial encasement of the inferior venacava. i hope someone understands this. the dr wants to start her on chemotherapy immediately. he says surgery is not an option for her. they want to use gemcitibine and cisplatin. we dont know what to do. we want to get a second opinion before she starts chemotherapy. does anyone have any suggestions or know if there is a surgeon who would be willing to operate on her. this is all so quick. the dr says she is currently in stage III. we dont want to make any rush decisions but also dont want to cause her any more problems if we wait. i would appreciate any suggestions. thank you very much.
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