Newly diagnosed
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Dear Barry, Welcome to our remarkable family and the best place to be for CC support. We know when you hear the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you through the first leg of the CC journey. Knowledge is the most important tool to begin this 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 and the Hospital for treatment, are very experienced with CC. Don’t 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 you may find helpful: http://cholangiocarcinoma.org/newly-dx/
Please do keep us updated on Colin’s progress as we truly care.Barry….liver transplantations vs. resection has proven quite successful with this cancer re: long term positive outcome. The upcoming visit with Mayo will clarify Colin’s eligibility.
In regards to radiation: What type of radiation is offered at OHSU?Hugs,
MarionThank you for joining this site as that is the best step to get support. It is crucial that you get at least 2-3 opinions from oncologists as they have different views for treatment, and research each option to make the best decision. What type of CC does he have and has it spread? What is his current treatment? Is surgery an option? I am not too sure about liver transplant and I know there are studies that show if they are successful or not for CC. He is very young and each individual who gets CC should be evaluated differently.
Was it definite through a biopsy that this is the diagnosis? Make sure he gets very good nutrition with great support and a positive outlook. We have to always look to treat the whole person.Please keep us posted.
Our son Colin who is 33 and lives in Portland OR was recently diagnosed with PSC and CC. We are fairly new to the site, but are attempting to expand our knowledge base, so that they we can get a grasp of alternative treatment options. He is presently being treated at OHSU in Portland and has had 3 chemo treatments. We have an appointment at Mayo on May 8th to better understand his opportunity for a liver transplant; to get a 2nd opinion and to determine if he should get radiation treatment at Mayo instead of OHSU. If anyone would like to weigh in on any of this, that would be great. Thanks so much for all the help and support that is happening here. It’s very reassuring, as we attempt to understand what we are dealing with here.
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