Diagnosed with perihilar CC

Discussion Forum Discussion Forum Introductions Diagnosed with perihilar CC

This topic contains 3 replies, has 3 voices, and was last updated by  sparkeyT 1 week, 2 days ago.

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  • #13133

    sparkeyT
    Participant

    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

    #13136

    Julie_ammf
    Moderator

    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
    Julie

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

    #14679

    jconn_88
    Participant

    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.

     

    thanks,

     

    Charlie

    #14896

    sparkeyT
    Participant

    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?

     

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