Just been diagnosed

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Hello everyone. I just got my results after a TURBT. My cancer is invasive and my options are radiotherapy or full bladder removal and a stoma.

In complete shock and looking for anyone who has been through this or us in the same place as me. 

  • Hi,

    Welcome to this very supportive group, which you will find a help at this distressing time. Now most forms of bladder cancer can be treated effectively and successfully. I had a RC and stoma seven years ago and I wasn't offered radiotherapy, as my oncologist was of the opinion that the RC was more effective. Yes, you have to make obvious adjustments, but by and large I've had a normal and quite fulfilling life. Did your specialists offer a neobladder?

    Now things probably seem fuzxy and your head is spinning in all directions, and that's normal, but things will start to get on an even keel.Don't be afraid to say what you feel on here, it's not a problem, or to ask any questions, no matter how silly they may seem to you, so don't be a stranger.

    It doesn't matter where you go, there you are
  • What a lovely message. Thank you. A neobladder has been mentioned and I think that a RC will be what they may believe is best for me. I’m just about to start Chemotherapy. I feel hugely supported by everyone and I am trying to stay as positive as I can. Your final comment summed it up! I certainly will stay in touch. X

  • I have not had  RC but just want to wish you well on your cancer journey, you will get lots of support from all the lovely people in this group. Lynn x

  • Best wishes for your chemotherapy Liza.Love Jane xx

  • I had RC & neobladder 12 years ago. It is hard work at first, compared with stoma, and has greater risk of complications. You need to be prepared for initial incontinence, frequent toilet visits and monitoring output at first. This should all improve, takes longer for some people than others. There is also a chance of needing to self catheterise - I have to do that every time I void, but it's really no bother. You also have to get up at night to empty, whereas with stoma you can use a night bag and sleep through. Although I still wear a pad at night in case of leaks, I'm very happy with my neo. Best wishes with whatever you end up having.

  • Thank you. That is reallyhelpful . It’s still not decided and I know neo bladder surgery isn’t available everywhere. Just about to start chemotherapy which I’m also dreading but I just have to get on with it. I have had great support on this forum so thanks again x

  • Hi

    I didn't find chemo too bad. However, don't be surprised if they have to stop periodically and give you a short break  that's quite common. The other thing I remembered was not realising how fatigued I felt at the time, so try not to overdo things even if you feel ok. It can also be a bit boring, as the sessions can be quite long.

    • All the best
    It doesn't matter where you go, there you are