The dreaded C word!

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Hi everyone. Well this is a place I didn’t expect to be, but i guess that’s what everyone else first thought too. My dad was recently diagnosed with bile duct cancer after going back and forth to his surgery for a year, with various symptoms and feeling awful most of the time. We decided to pay for a private ct scan, as the wait for various tests takes weeks by the least. Thank goodness we did as my dad now has a reason to what has been going on, and he now knows he wasn’t going crazy and it wasn’t just in his head.

I decided to join this group as knowledge is power as they say, but I feel so helpless and emotional and struggling to continue to work without breaking down in tears. I’m the eldest of six too and everyone has their own opinions and emotions, and we all agree that whatever our dad wants or doesn’t want to do, we all agree that it’s his decision, but it’s throwing so much angst up in the family it’s awful. Our mum has mental health and mobility issues, so we have to consider her in amongst this too. 

  • I am just so sorry to hear your news. I am hoping that your father has a biopsy booked and also please ask for a gene test at the same time. The reason for that is that depending upon your fathers genes there are specific targeted drugs, rather than having chemo. 
    I do suggest you visit the AMMF charity website as they help with this specific type of cancer. 
    With best wishes for you and your family, especially your father. 

  • Hi Ary, thank you for replying and your kind words. And thank you also for your advice on the gene test and the AMMF charity. Sending warm hugs x

  • So sorry. I have Cholangiocarcinima too.  Was diagnosed last year. 

    I am still getting Chemo 

    Has anyone heard of Ivosidenib which is a targeted therapy for bile duct cancer 

  • No I haven’t - but I am hoping it works wonders and does what it was designed to do. Good luck 

  • I have sadly become member of the bile duct cancer. You are right here seems to be no urgency in the treatment we receive   The amount of times I attended and e was shameful given paracetamol  then sent home it began in the middle of October and not until I had sepsis and was going yellow did they do an endoscopy they said gall stone in the morning in the night they came  bsck and said it was cancer I asked for chemo they said o I would have to have a whipel operation after I was not seen by the surgeon until February so my tiny cancer was left to grow and the meds did not take the pain away basically as I didn’t stopsmoking the operation was cancelled twice 

    and guess what I was sent  for chemo  in April  bless them the day before I was due to attend I received a call to say I had been signed up for the wrong one could I come in earlier and sign up for another there was more messing about and I cancelled it there is more but I won’t bore you

    i think you are doing the right thing l

    letting your father decide what he wants

    thdreiss feeling of helplessness I know but the best you can do is be honest and open ask if there is anything he would like to do make the most of each day and try to put the cancer on the back burner go on as you usually would with him listen to him and I Cantrell you just being with talk about the day anditis the most wonderful thing you can do he’s the same person but unwell you seem to be your best in a dreadful situation but he will appreciate the love and support  you are giving 

  • I’m horrified to hear your news and the lack of help you have received. Indeed speechless. 
    I hope you have friends and family close by and at last something is being done for you. 
    Good luck.