Bile duct cancer T4 N1

FormerMember
FormerMember
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Hi 

I have just been diagnosed with bile duct cancer T4 N1.They have said it is inoperable and my only treatment is chemo but no cure. I am finding I difficult to comes to terms with it ,as up to recently have felt very well.All my bloods are normal including all liver tumour markers and liver function tests. There is no spread to anywhere else I'm 54 and fit.

I'm really looking for positive stories of people in similar situation who have survived and gone against the terrible statistics.

I'm hoping the chemo will work and shrink it enough so they can operate .Has this happened to anyone?

  • Hi and a very warm welcome to the online community

    I'm very sorry to read that you've recently been diagnosed with bile cancer. Although I didn't have the same type of cancer as you I remember very well how shocked and numb I felt when told.

    Your best bet to find positive stories in the group would be to have a look through the older posts. It's a bit of a Catch22 situation as people who have positive stories to tell tend to leave the group once they are cured or stable, so are not around to respond to you. However, hopefully they will have told their story before leaving. I hope that made sense!

    You could also use the search bar in the group and put in keywords like 'chemo' or 'surgery' and see what posts come up.

    When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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  • FormerMember
    FormerMember

    Hi there

    I was diagnosed with bile duct cancer 3 years ago

    and had a liver resection at Leeds and then 

    6 months chemo

    Have you a tumour in the liver or bile duct?

    I was 64 when diagnosed no reoccurrence so far

    but have regular check ups

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Ramblegirl,

    Yes I have bile duct cancer but too advanced to operate so will be starting chemo soon. It is good to hear your positive story. I am hoping the chemo will shrink it enough to enable them to operate.It has not spread to anywhere else in my body so far!Trying to stay positive.

  • FormerMember
    FormerMember

    Hi there, 

    Sorry to hear about your situation. I have found that because bile duct cancer is relatively rare, it's hard to find a lot of information on it. Any information I have found has painted a pretty bleak picture.

    But you aren't alone!

    I was diagnosed with cholangiocarcinoma (klatskin tumour) about 14 months ago. I was told it was inoperable, and they would put me on chemo to try and reduce tumour growth or possibly shrink it. As a slight chink of light, if the shrinkage was significant, it might make me eligible for a liver transplant, but that was always going to be a long shot. Life expectancy was estimated at a couple of years based on available stats. Pretty grim. 

    Anyway I got started on chemo (Gemcarbo) just as Covid exploded in March last year, and had to immediately drop to a reduced dosage. A scan after that showed that the tumour had actually grown slightly which was somewhat disappointing. In the meantime I had been I investigating other options. Fortunately I have Bupa through my work, and was able to avail of stereotactic radiotherapy through a private clinic in Oxford called GenesisCare. They have sophisticated equipment which allows them to deliver high doses of radiotherapy in a very precise target area. I have now also started my 2nd course of chemo (Folfox). I'm due my next scan in a few weeks which will be interesting. 

    The good news is that I am still relatively healthy, maintaining an active lifestyle and still working albeit from home. So despite the bleak picture painted at diagnosis, I feel that I am doing better than expected. Might not beat this thing but I'm going to to have a good shot at hanging around for as long as possible!

    Hope you are getting the treatment needed and that it puts surgery back on the table as an option. 

    Take care 

    James