No treatment options

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For almost a year my dad was having problem urinating and was receiving treatment for prostitis. It wasn’t improving but he had no blood or anything so doctor wasn’t that concerned but referred him for a cystoscopy which showed a growth on his bladder.

he then had a TURBT 6 months ago and biopsy was urethelial cell cancer high grade PT2.  He was advised to have chemotherapy and then an RC. Unfortunately he had some side effects and only completed 2 rounds of 4.

he had his RC 10 weeks ago and pathology results were significantly worse.  T3b micropapillary variant.  He has since been told that there are microscopic cells in his stomach and pelvis but no lymph nodes are affected - does this now make him stage 4?  A further letter explains that he is pdl1 negative so unsuitable for immunotherapy. The lettter also says unsuitable for chemotherapy or radiotherapy.  It’s almost like they’ve just abandoned him with a dear John letter.  I’m so upset and confused.

  • Hi 

    Welcome to the group, but so sorry to hear about your father and his diagnosis.

    Sounds like he and the family have been through a lot recently.

    Unfortunately I can't really offer any advice regarding his diagnosis etc, but do you have a cancer support nurse you can contact? 

    Or maybe give Macmillan a call?

    I really wish you all the best and hope you get the support/advice needed soonest.

    Take care 

    Trevor 

  • That does sound a bit blunt and understandable that you feel upset. I think it's a problem with one department issuing a report, without saying what happens next, eg which dept the patient will be referred on to. There must be some sort of follow up to monitor your Dad's condition and address any related symptoms, but it might be a different dept. If possible, worth following up via consultant's secretary. Another route is to contact the hosp PALS dept to find out what happens next. Best wishes to you all.