I have browsed this site from time to time looking for answers but today joined the forum having seen one or two people are at a cross roads in decision making about the bast choice of treatment. In this day and age we all expect there to be a cure for every ill but like many others who have posted on this discussion forum, I was shocked and distressed to learn that my mum had in-operable cc. 18 months ago. The only palliative treatment the doctors could offer at the time was (eventually) a metal stent that served to bypass the tumour and reduce the extremely debhilitating jaundice that was in itself threatening mum's life. The stent in itself turned out to be a life saver!
We took a while to accept the diagnosis and mum and the rest of the family prepared for the worst. With a prognosis of 6-9 months and with no idea what to expect we took comfort in other people's reassurance that cc is not always associated with severe pain; the worst symptoms often being reported as extreme fatigue, sleepiness, loss of appetite and weight loss. We still don't know what lies ahead, but in 18 months we have enjoyed some good times together (twice as long as we initially anticipated!). Mum musters up the strength to stay awake all day when we get together and providing she eats what she fancies, the vomiting and appetite problems aren't too bad on the surface (although a nuisance to mum, who once loved food!). Best of all, without treatment, mum is still with us, functioning better than she did when she was jaundiced and is still fairly independent despite being in her 70s and having a few other medical problems as well. She was certainly more active and fitter two years ago before the diagnosis (which takes some getting used to, as she was always "young" for her age).
I am sure that the day will come when we have to face up to rapid deterioration, but for now we are enjoying and appreciating mum's company. I feel priviledged that we have had "an extension" to the time that we expected to have left, to spend some quality time together, without the complications brought about by the initial extreme jaundice or the potential complications that chemo might have caused (she decided against chemotherapy). I hope that she carries on for a while yet- who knows? Because Cholangiocarcinoma is rare, we don't yet know enough about the best choices that sufferers can make to improve their life expectancy, but as far as quality of life goes for her, I think mum made the right choice in opting to take her chances and not have chemo. I wouldn't say that is right for everyone, but her positive attitude and determination (I think) has had a large part to play in her remaining relatively well throughout this illness so far.