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
Hi and a very warm welcome to the online community
I'm sorry to read that you've recently been diagnosed with cholangiocarcinoma and I totally understand what a worrying time this will be for you.
As you know the online community is divided up into different support groups so I'm going to recommend that you also join and post in the bile duct cancer group, which is a great place to ask questions and share experiences, and also the diagnosed at a young age group which is a safe and supportive place to share your feelings and get support from other young people.
To join these groups just click on the links I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could pop something about your diagnosis and treatment into your profile as it really helps others when answering or looking for someone with 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"
