Newly diagnosed with Cholangiocarcinoma

Hi Charlie, I’m so pleased you have fantastic news , I could hug both of you we did see the oncologist Thursday just gone , but unfortunately all the jaundice hasn’t drained . They have given him another two weeks to see if there is any change. If not then unfortunately it’s another stent . I’m at my wits end , as we all know this is a aggressive cancer & im so worried it might be to late for chemo. …. I really hope you keep having successful treatment it’s wonderful news . £20.000 wow , better do the lotto lol . Please keep in touch, it’s lovely to hear good news xxxx

Hello Charlie1234, I hope you don’t mind me joining this conversation so abruptly. Firstly, I’m glad your husbands tumour had shrunk down from treatment. Your message about SIRT caught my eye. We too looked down this route for my mum at The Christie Clinic in Manchester, Professor Juan Valle was amazing in helping us. I’m not sure if you know, so forgive me if you do.. but SIRT was once on the NHS as a treatment for Bile Duct Cancer, and was removed due to funding back in 2015. He helped us majorly and pushed for scans which were needed from the NHS which they kept refusing, he also sent of her biopsy to get genetic testing done in America. We had a quote all in for 25k which we would have gone for if we hadn’t just been given such great news recently all with the help from The Christie Clinic. 

Hi, sorry I've been a while replying but I didnt get a notification from Macmillan to say I'd had a message from you. I hope the jaundice has drained and that your husband has managed to get some chemotherapy. It's such a stressful and worrying time. Nothing prepares you for this. It was like my worse nightmare come true. I am not surprised you are at your wits end. I found it very difficult to believe at first, I suppose that was denial, you go through so many emotions. No one can really understand how awfull and shocking it is to find out you have incurable cancer, unless you've been through it. My husbands tumour has now shrunk a little bit more and they are yet again looking at the possibility of an opperation. This is the third time weve been told it might be possible. The wait is excruciating. He has to have another scan to confirm if it can go ahead but it could be one big disappointment, yet again. I am not getting my hopes up, only to have them dashed again. My thoughts are with you. I hope you have some better news from the oncologist. X

Hi, thankyou for your reply.. I can't remember who we saw at Manchester Christie and we are away on holiday at the moment, so I can't check the letter from the hospital. Your information could be very useful in the future. You say you had good news recently, what was that?