RC in 2022

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I had 3 x TURBT in 2021 but in last histology G3TP1 was still present.  Couldn't tolerate BCG so had RC - removal of bladder, full hysterectomy and appendix removal, have an ileal conduit with stoma - all working well.  Cancer cells also found in L ureter when operated on, cells removed.  Two years later and CT scan all clear but bleeding started in May this year, quite shocking, very red - once  every few weeks, once a week, once or twice a week and now every day - clears up but then starts again next day.  Consultant says possible recurrence of ureter cancer, will arrange an in-depth scan but not right away as not good to have scans close together (really?).  Just wondering if anyone else has had this bleeding - only have kidneys and ureters and conduit left so must be coming from somewhere there?? Can't think what else it could be apart from cancer recurrence

  • How rotten for you. Does sound reasonable not to subject the body to too much X rays at a time. Hope you get answers soon.

  • Hi TessaB

    If I had been given the news that it might be a reoccurrence then I would be pushing for more scans whether CT, MRI, PET or Ultrasound to confirm the diagnosis so that a further treatment plan could be devised. I do understand that multiple X Ray doses are not advisable but as we already have or have had cancer then surely any reoccurrence needs prompt treatment to prevent further spread. I'm not a Medic but I have learned that those who do not shout loudly sometimes get overlooked. I would certainly ask about the rationale of watch and wait rather than to diagnose and treat. 

    Hope you get some answers soon.

    Love Ade xx

  • Hi TessaB,I’m sorry you are having bleeding again.I hope you can find out what is going on soon.Love Jane xx

  • Thank you, yes you're right, unfortunately the consultant was not a people person, more like a cold fish.  Yes - if you're thinking cancer recurrence get me into a scanner ASAP!.  Will be pushing that's for sure.  Thank you

  • Thank you for kind words xx