Diagnosed with perihilar CC
January 28, 2018 at 10:53 pm #13133
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 xxJanuary 29, 2018 at 8:42 am #13136
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/
Please note it is not appropriate for AMMF to give medical advice or recommendations, and all details provided are for information purposes only.April 15, 2019 at 11:04 am #14679
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.
CharlieJuly 7, 2019 at 9:59 pm #14896
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?September 10, 2019 at 9:12 pm #15016
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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