Cholangiocarcinoma in my early 20’s

Hi guys I stumbled across this forum indirectly looking for support or answers after my meeting with the specialist - (as I’m sure we all do similar. When you hear the dreaded C word. 

 So I suffer with Crohn’s disease and I am on daily meds for this, or should I say That I was until about 6 weeks ago when I was taken off them for them to investigate my liver as I repeatedly have high liver function blood results when I go for 3 monthly bloods. We were aware that the meds could affect my liver hence me having to have regular bloods. However once being off my meds for a suitable time the results were still high so the nurse wanted to investigate further as as far as we were concerned it was still something up….

 So I was sent for a ultrasound scan on my liver and a fibroscan to see if there was any liver damage,  I went for my ultrasound first of all Was lay down the nurse was doing my scan talking as usual making me feel comfortable when all of a sudden I noticed her tone of voice change and she repeatedly went over the same area again and again, I thought something wasn’t right but nothing was said there and then and I was told it will be reviewed and I’ll get my results  which is normally the norm….so I thought nothing of it as such.

The next day or two I got an appt through for an MRI scan for the following week, well actually less than a week. I knew something wasn’t right that I had this mri unexpectedly  come through, never mind how quick the appt was actually booked for. So I went for the MRI and a week later I got a call off the nurse to say that they had reviewed me in a meeting and there was an abnormal growth area of the liver they couldn’t decide between them what it was so informed me it would be sent to a super specialist to give there opinion in the next meeting which was a week later, the morning of the meeting the surgeon rings me direct, so as soon as he introduced himself I knew something was up. So to cut a very long story short he explained that the area in discussion he was ‘very concerned about’ and wanted me in in a few days to his clinic to see him. At the clinic he confirmed that he was 99% the growth is a cancerous one called ‘cholangiocarcinoma’ which is cancer of the bile ducts. He informed me it was very serious but he could not understand as I am a healthy young man in my early 20’s I don’t drink, nor do I do drugs or any other possible things that could cause this, so he was genuinely shocked and has been doing it over 20 years he has never seen somebody so young. He informed me that I have no choice but to have a liver resection to remove the growth and it will be within the next 4-6 weeks as that is the only form of treatment. So I am awaiting my surgery date… he said if it wasn’t for Covid protocols (having to put my case into a panel for them to decide how urgent it is and give a date) that he would have had me in the following Monday (this monday). Meanwhile I have a PET scan this coming week to check it is primary and not secondary.

I am not going to lie it’s a huge shock to me and my family, and to me it hasn’t even quite sunk in yet. I feel ok about it when I know I shouldn’t do but it just feels surreal. 
I am just very confused, scared, nervous along with a lot of other emotions and keep asking myself WHY? I am in my early twenties, I am fit and healthy other than my Crohn’s disease which is bad enough to live with, now this? . I really don’t deal well with hospitals I struggle with them at the best of time it really does trigger off my bad anxiety . I am also so worried about all the risk’s with surgery as it’s major surgery and the recovery is going to be really hard by the sounds of it. I am not allowed any visitors either due to Covid, I’ll be in for at least a week. I am just so up in the air about it all. I just wondered if there was anyone on here who could offer some advice, or would be comfortable to chat about it having been in a similar situation? Maybe someone young, or someone who has suffered with cholangiocarcinoma ? 

I know it’s a long read and I apologise but I’m hoping somebody may relate….

thanks guys 

  • Well I’m not as young as you but still young enough at 43 with a recent diagnosis. I can relate to everything you are going through. I had the operation in July so can answer any questions you may have. It’s hardcore but physically I feel pretty good now. Take it a day at a time. X

  • Thanks starsa, hope you are recovering now and are feeling better :) do you mind me asking you some questions re the surgery and recovery etc etc. I am very nervous. Would you rather do it on here or on here via personal message if that is an option (I’m not sure as I’m new to this)

    sam :) x

  • Ask away. I’m new to this too so I’m not sure of the rules. Everyone is different and of course you have youth on your side but I was in hospital for about 10 days after. I’m not going to sugar coat it. You will be in pain and it’s hard. Expect to take months to feel back to ‘normal’. I was very impatient, wanting to be better immediately so accepting it will take a while is important.

    However I am pretty capable again now. Not much I can’t do and it was only less than 3 months ago.

    Feel free to ask anything xx

  • Thank you -

    if you don’t mind a couple of the main questions I have are - 

    How long were you in intensive care/hospital for, when you came out of surgery to ICU, we’re you awake and aware of what was going on or were you very very drugged up/unconscious? I hate hospitals and they make me really really anxious . Even thinking about thinks like a catheter etc scares me and the epidural.

    coming out of surgery were they able to manage your pain on the ward enough or were you in agony?

    did you have open or keyhole/laparoscopic ?

    were you able to move or were you in that much pain you couldn’t move after surgery? 

    how long until you felt comfortable to eat/drink? 

    is there anything else I should be aware of or any tips you have or things that you can pre warm me to expect?

    I understand that’s quite a few questions and I appreciate you taking the time to talk to me, I’m very nervous about this and just wish my surgery date would come through (it’s in the next 4-6 weeks) then I can put this behind me. 

    thanks 

     

  • To be honest it’s a bit of a blur but initially I was heavily medicated which was the best thing really. For me the pain was never as bad as before I had the surgery. 
    the nurses were all so nice, I felt really well looked after. They understand how difficult it is for you.

    I had open surgery, many hours in theatre.

    I managed my pain just with paracetamol when I came out.

    I had to have a drain which is a bit odd but you soon get used to that. 

    In hospital they get you up the first day. It’s the last thing you want to do but it helps recovery. 

    Post surgery it’s common to be constipated but they give you stuff for that.

    I had some alterations to my bowel but could eat little bits. That department does take a while to settle down though but now I am eating normally.

    In terms of any surprises. The scar is quite large but to me it’s a small price to pay for a life.

    Theres no point pretending that it’s not an uncomfortable and painful operation but they really do know what they are doing and will answer any questions you have , every step of the way. 

    I couldn’t have any visitors either but you get through it.

    As best as you can’t try and postpone your worry until you have an operation date. All the worrying in the world won’t change anything and this is something you have to do.

    one day, in the not too distant future it will just be a memory. In the mean time keep as fit as you can and look after yourself xx

  • Thank you for that info. I hope your well on the way to a full recovery. It reassures me to know you were well looked after. I am not allowed visitors too which makes it harder but I suppose it gives us time to fully relax and recover post surgery. I can’t wait for that day when it hopefully comes, thank you. Same to you. Take care and look after yourself 

  • How are you? How did it go?