newly diagnosed
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Dear WillC, Welcome to our remarkable family and the best place to be for CC support. Truly sorry to read about your diagnosis and that you had to join our elite group. We know when one hears the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you get through the first leg of the CC journey.
Knowledge is the most important tool at this point to begin the fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Make sure that the Oncologist you choose along with the Hospital for treatment, are very experienced with Cholangiocarcinoma.
Do not be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
Here is a site that may be of help: http://cholangiocarcinoma.org/newly-dx/
Please do keep us updated on progress as we truly care.
Will…welcome to our special group.
The protocol for liver transplantations is very restrictive, hence the majority of people don’t fit the inclusion criteria. Having said that many are responding favorably to the current treatment options. How are you fairing with the treatment and what does it consist of?
Have you had a biopsy and has your tumor tissue been tested for molecular alterations?
Hugs,
Marion
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