Just saying hello. I was diagnosed with Cholangiocarcinoma on 17/07/24 and would be happy if anyone would share any experiences they have had with this cancer.
Hey Mitch, I'm a year post diagnosis and still going! There's some amazing info and reasearch going on into CCA at the moment, would recommend you connect with the Ammf and the Cholangiocarcinoma.org groups.
Some really amazing FB groups too for support chat and info too.
It's a tough one to get your head around but there's plenty of us out there that are doing well long after diagnosis.
Feel free to ask me more, but main thing you need to do is get the biopsy tested for biomakers.
The Multi Disciplinary Team have organised for me to have two endoscopies staring next Wednesday (on the same day if my body shows it is coping well with the first), I assume they will take biopsies if they think it is appropriate. My assigned nurse is keeping me in touch with all developments. My latest blood tests still show elevated liver enzymes but they have not increased since the last tests.
Some good news though, a targeted bowel cancer test came out positive. However, a colonoscopy a couple of days ago showed nothing sinister so that's something!
The original doctor said that surgery seemed an option, depending on the endoscopy, and they would be seeking to remove part of my liver, lymph nodes, bile ducts, gall bladder, pancreas and the small bowel. Seems strange that you have to hope that this is the option but that is it with this cancer nothing else will get it.
