Mum diagnosed with terminal gall bladder cancer???

FormerMember
FormerMember
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Hi my mum got diagnosed with terminal goul bladder cancer 4weeks ago after she was having surgery to have a bag on for suspected chrons but end up coming out of surgery with no bad and a life sentence,anyone no anything about this cancer as everyone at the hospital seems to be clueless because it's so rare 

  • FormerMember
    FormerMember

    Hi

    I was diagnosed in 2013. If I can be of any help


    X

  • FormerMember
    FormerMember in reply to FormerMember

    O sorry to hear that, has yours spread? My mums has spread to the liver and the lining of the stomach, still waiting to see a oncologist x

  • FormerMember
    FormerMember in reply to FormerMember

    Mine spread into my liver and had resection the same year followed by chemo. Outlook was bleak at the beginning, but I’m still here and fairly well. 

    Try to stay calm easier to say. 

    Over the last year I have found a few more people with GB cancer and some are survivors.

    Information is no existent on it, they don’t really investigate it much either. 

    Tho

    [edited by admin]

  • FormerMember
    FormerMember in reply to FormerMember

    I was diagnosed with GB Cancer on the 28th September this year after routine GB removal and stones in cystic ducts, along with Pancreatitis....i have another CT tomorrow to see if I need further surgery on my liver and chemo...my cancer team in Sheffield told me that the type of Cancer I have is rare even more so with me as I'm young for GB Cancer but it's incurable and unpredictable..its always going to come back they just don't know where so for the rest of my time on this earthly plane I will be scanned every 3months .....I'm still coming to terms with everything but staying as positive as I can and taking each day as it comes... 

  • FormerMember
    FormerMember in reply to FormerMember

    I'm sorry to hear that it seems they won't do anything for my mum my email is [edited by admin]

  • FormerMember
    FormerMember in reply to FormerMember

    I am sorry to hear you have joined this rare cancer, that seems to be becoming a little less rare. I was diagnosed in 2013 after routine GB removal, had liver resection and chemo. So far I am still going. 

    I too thought my future looked bleak but I’m still here. 

    If I can help shout or lookme up on FB 


    Good Luck 

    Xx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi everyone

    I'm afraid it's against our guidelines to share personal details on the site and therefore we have edited any mentions of these in this discussion. 

    If you wish to talk privately you can do so via our private message system.

    Any questions just write to us at community@macmillan.org.uk or reply to me on here. 

    Best wishes,

    Jess

  • Hi Kaestar, they normally like to do a second op, a liver resection if the gallbladder is  found to be cancerous after it is removed.  This is to ensure clear margins around the area. In my case I had gallbladder removal and liver resection at the same time because they found the growth inside the gall bladder by accident on a scan. Sorry you are dealing with this and quite young too. There have been 2 or 3 younger ones on here with it so perhaps not as rare in the young as some of the Drs think.  A couple of them still pop in here from time to time. Hope your CT scan went well today and yes, stay positive. 

  • Sorry to hear about your mum Stace. Have lots of questions ready when you go to see the oncologist. 

  • Hi Kaestar, I’m Colette and I was 46 when I was diagnosed with stage 3 gallbladder cancer last year. Same as you I had my GB removed and 7 days later was called back to meet my surgeon. They’d found a T2 adenocarcinoma inside mine. Fast forward 5 weeks and I had a liver resection, gallbladder bed, most of my bile duct and all lymph nodes removed. They found a second tumour growing into my liver (which was removed during surgery) and then I had 6 months (8 rounds) of chemotherapy. 

    I know it’s scary and I won’t lie it’s a bit of a hard slog but if you’ve been advised to have adjuvant chemotherapy then that’s a positive for you, it means they can and are doing everything they can to save your life.  Yes it’s rare, yes it has little research money pumped into it but it isn’t necessarily a death sentence to all. 


    Oh and by the way, I had GBC and followed it up with a second unrelated cancer, thyroid cancer all within the last 20 months, I’m just recovering from a total thyroidectomy, a right side neck dissection and radioactive iodine treatment and I’m ok, I don’t feel poorly, in fact I feel ok, so my advice would be to forget all about the statistics about mortality with this disease, we are NOT statistics and we can win the fight xxx