bleeding currently after RC and ileal conduit/stoma 2022

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I had 3 x TURBT then RC in 2022 and have an ileal conduit and stoma.  G3TP1 for bladder cancer and also found in L distal ureter.  Some intermittent bleeding last year - was told 'bit of random bleeding', keep an eye, etc etc.  Since May 2024 bleeding into stoma bag more frequent, now most days, sometimes light, sometimes heavy.  CT for 2yr check end May 2024 all clear.  Consultant appointment this week who said likely recurrence of ureter cancer, will arrange indepth scan of ureters/ileal conduit in couple of months as only had one a month ago and not good to have too many close together.  He was not a people-person! When you have potential recurrence of cancer this seems a long time to wait when still bleeding.  I'm sure he knows best but I am very anxious understandably - your opinion appreciated.  Thank you

  • Thanks for getting in touch with our online community. My name is Michael and I am one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

    I hope you are finding our bladder cancer forum helpful. It can be a good place to support one another, ask questions, and share experiences.  

    It sounds like you have been through a great deal of treatment for your bladder cancer. The emotional impact of living with bladder cancer can be huge. Many people report experiencing a kind of "roller-coaster" effect.

    You may already be aware too, of support available from Action Bladder Cancer UK and fight bladder cancer

    I am sorry to hear that since May 2024 bleeding into your stoma bag is more frequent. This must be very concerning for you, along with what your consultant has said about a likely recurrence of ureter cancer.

    It is completely understandable that you are feeling anxious about having more  cancer tests and waiting for results. Coping with uncertainty can be one of the hardest feelings to deal with.

    We don’t have access to your medical records, but within your healthcare team, you should have a named clinical nurse specialist (CNS) who you can speak with about your concerns. They will have access to all of your records, and can also speak with your consultant on your behalf, about these.

    In the meantime, If you experience any new, worsening or changing symptoms we would always advise that contact you clinical team straight away or NHS 111.

    If you feel that your condition is ever life threatening, then dial 999.

    I hope this information is useful. Please don’t hesitate to call to speak through your concerns. If you are unable to call, you might consider speaking to us via webchat.

    The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

     

    Best wishes, Michael

    Cancer Information Nurse Specialist 

    Ref: MH/DK