Bladder cancer spread to lymph node

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I was diagnosed with MIBC in May 2022, 4 rounds of chemo then removal of bladder, hysterectomy, ovaries and 12 lymph nodes... Was all NED,. Due to complications I have been having 3 monthly scans to check for narrowing of the ureters... Oct scan picked up a swollen lymph node, follow up scan in Dec showed slight growth. I met with my oncologist on Thurs. He confirmed no spread elsewhere but that I was now incurable. I start immunotherapy on 18/1 which according to him will maybe delay the inevitable... I and my family are devastated... I know it's early days but I can't think straight.. How do I cope and get through each new day? I'm 58 

  • Hi Mel1965,Welcome to the group.There are others here in your situation who will hopefully be along to offer support.Best wishes for your immunotherapy.There have been some good responses to it on here.Love Jane x

  • Sorry to here your bad news, i too have been told my BC is incurable and i have just started my Chemo Treatment 2/1/24. I get by as i decided i would just carry on as normal and asked my family and best friends not to treat me any differently to how they did. (not working) Smiley

    We all as individuals cope in different ways, i have always been a get up and go sort of person and i am lucky that i try not to let anything faze me. I have found it is easy talk to your Good friends (you will know who they are) as opposed to family as it can soon turn to the later in life issue.

    I do not divert away from the issue if it brought up and in away i gain strength from the conversations. Also reading the posts on here help me as i know there are people in a lot worse condition than i am in at present.

    All i can say from my experience is just live your life in a way that you want too.

    This is our time now


  • Hi mel1965,
    You have described the same journey I am on.
    Bladder (etc) removal in June 2020, scans show recurrence in lymph node in pelvis in August 2022.
    This is then classed as secondary and treated as palliative rather than curative, which did come as a shock to me too.

    I was fortunate to get on a clinical trial (EV-302) which won’t help you as it is closed, but you should ask your oncologist about other trials that may be available for you. 
    my trial is showing really positive results so things are improving with bladder cancer treatments. 
    I’ve been on my trial for 15 months and am scanned every 9 weeks with last one showing NED.
    Try and be positive, as I say, things are improving with treatments.

    And I agree with everything billz4 says.