Diagnosed with perihilar CC

Discussion Forum Discussion Forum Introductions Diagnosed with perihilar CC

This topic contains 4 replies, has 3 voices, and was last updated by  jconn_88 1 month ago.

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    Hi, I just wanted to share my story. Firstly I am so happy to have found this wonderful website dedicated to CC. 
    I am a 32 year old single mum who has been diagnosed with perihilar CC.
    I never had any symptoms other than severe pain in my back- I thought it was my lungs although I could breathe ok.
    It went on for 2 years and 2 private appointments before I was diagnosed. I was initially told gallstones- although there weren’t any to be seen on an ultrasound.
    I used to get excruciating pain every 6 months that I would need to go to A&E where they said it was probably something to do with gallstones and discharge me. This went on for 2 years- eventually I paid to go private (ironically it was the same dr that discharged me! On the NHS) however he wanted me to have an MRCP which I had and that showed a structure/tumour they weren’t sure but put it down to a mechanical fault! I had a repeat scan 4 weeks later and they booked me in for an EUS which then resulted to ERCP with spyglass.

    I saw the dr before hand who was adamant it wasn’t cancer- however I underwent the ERCP but unfortunately the punctured my bile duct, they weren’t aware until I woke up literally screaming- boy that hurts!!

    I was very poorly afterwards and they wanted to go back in as they were unsucessful in getting a biopsy although they had brushing which were benign.

    I was petrified to have that again so I began researching and found prof lodge in Leeds (thank god) I went to see him privately, he did not want me to have a repeat ERCP due to the danger and instead wanted to operate- they did so I have to say that even they didn’t think I had cancer (due to age?)

    Anyway I guess I feel lucky, that I preserved thankfully- and Leeds were wonderful…. I’m currently taking capecitabine. I find it all so confusing- I didn’t even know bile ducts existed before this ha! I find it frustrating that I can’t be told anything… all I’ve been told is that it is more likely to come back as I had perineural and lymphovascular invasion. But that means nothing to me.
    I know I’m lucky to have it removed but what next- I lost my job from this!  I guess the impact is bigger than the actual tumour- it really is a sod of a disease. You are all warriors xx



    Dear sparkeyT

    Welcome to AMMF’s forum and thank you for sharing your story and for your kind remarks regarding the website.

    You have obviously been through a very difficult time throughout your diagnosis and treatment and we are glad to hear that you have found a specialist who you have confidence in.

    Please look at our website which has a wealth of information regarding treatment etc, which you may find useful https://ammf.org.uk/

    Kind regards

    Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.



    Dear Sparky T,


    I am a 30 year old man and was diagnosed last year. Reading your story we seem to have many similarities in our journies. I am currently on capecitabine and have 2 months left to go.


    I see that you are a year on from your post and I just wondered where you were at with things now? I cannot find any info for people in my position and what to expect after chemo.







    Hi jconn_88

    I’m so sorry for such a late reply, I have only just seen your message.

    Have you finished capecitabine now? I hope it wasn’t to harsh. How are you doing now?

    The good news is I’m still NED! I have found that I have to push for scans to be done.

    Since the surgery I have found that I struggle with my appetite and sickness and have had a few episodes of cholangitis. Bit I’m not sure if this is something that is common.

    How are you doing now?




    Hi SparkeyT,


    No need for the apology. I’m really pleased to hear that you’re doing well.

    I finished capecitabine and then decided to do radiotherapy, with a further course of capecitabine. I found that really hard. It was difficult going to work and going to hospital every day.


    I too am now NED, which I’m obviously delighted at. I just have this anxiety of what may be round the corner. I know you have to stay positive but it’s not always easy. I suppose thats the reason I find myself on these forums. I haven’t had a scan since stopping treatment and I just hope that it’s still all good. Time will tell but im hopeful and looking to the future.





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