Cholangiocarcinoma

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My partner (72 years old) of 26 years was diagnosed in 2021 with bile duct cancer.  It was stage one. He had no symptoms at this time. His twin brother and 2 other brother had all passed away with different cancers. He asked if he could be checked as he was worried he would get it too. Within 2 weeks he had a whipple surgery procedure. The chemo tablet form.  He has had 3.5 years of good health. He had a ct scan in Feb of this year sadly the cancer has returned.  It's back at his resection site and he now has it in his peritoneum. He asked for a further ct scan waited another month as he has made the decision if it's aggressive and fast growing he won't op for chemo.

So we are awaiting the results of the scan.  Has any one else done the same thing?

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

    While you're waiting for replies, it would be great if you could put something about your partner's diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. 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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     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Thank you for your advice. I have noticed these messages don't seem to be well used .many are over a year old which is a shame.

  • Hi Ness246,

    I am so sorry to hear of your partner's result having endured surgery just a few years back. 

    There is a very active Cholangiocarcinoma Support Facebook page where people ask these sort of questions.  It's not everyone's cup of tea as there are some sad posts but I thought I would mention it. 

    Also the AMMF charity website offers lots of advice & recommends being referred to a specialist hospital if you are not already being treated at one.  Asking for second opinions too.  The UCLH seems to lead this field in England promoting molecular profiling for targeted treatments. 

    I apologise if you have already investigated these options.  It's just that I found so much more information after my husband's surgery that I wish I had known beforehand.

    I hope you don't have to wait long for the results & find the advice you are seeking.  Take care