Cholangio carcinoma

Hi I was diagnosed in 2020 with this cancer after feeling very unwell and then getting jaundice, was transferred to The Royal Surrey hospital to see a lovely sugeon Proff Karanjia who said I would need the whipple op to hopefully take this cancer away, had the op in march with a long recovery which went pretty well, after 6 months I should of had chemo just as a safegard but because of covid and I had DYPD deffiency I couldn't have it so I just got on with life hoping it would'nt come back, I got to about october that year and started feeling pain was getting out of breath walking the dog and tiredness so contacted the hospital and they arranged for me to see my surgeon who told me it was proberbly back, had a scan and sure enough it was back and was on the main artery, so was reffered to oncology and started Gem/Cis after 6 I had to stop cause it made so ill and i'm now waiting for sabre radiotherapy and just hoping they can blast this bloody cancer as I am so weak now and tired, I just want to get on with my life and be the busy person that I used to be

  • Hi and a very warm welcome to the online community

    I'm sorry to read that your cancer came back this year and you were unable to continue with treatment due to side effects. 

    I was diagnosed with a different type of cancer but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be more easily spotted.

    Wishing you all the best with the radiotherapy and I hope it allows you to resume your busy life.

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  • I also have this dignosis and was operated on my professor Karanja! How are you now?

  • I'm not too bad Starsa I am starting Sabr Radiotherapy on Monday I have been told it's not operable or incurable which hit me hard but I am a very determined lady and I'm not giving up yet, this treatment hopefully will shrink or stablise the tumours, I am cross with my oncology as they did not tell me that there was 2 tumours and a spot on my liver so when I see them next I will ask why? as I have always said I want the truth, I had great care from the surgical team I'm sure you will have spoken to Graham Pinn at some point and I found him excellent as well as Prof, how are you doing?

  • That all sounds really tough.

    im doing oral chemo. I’ve been having some pains too. What pain did you get?

  • Hi Starsa

    I had pain in the place were I had my operation and I was getting out of breath which is why I contacted Graham and said that I thought there was something wrong, are you having pain? if so always question it so that your seen sooner rather than later, good luck .