High grade recurrence

Hi Catfan . It's unusual for a nurse to offer an opinion at a cystoscopy as it is just a visual inspection and grade can only be confirmed under a microscope in a lab. Not had the pleasure of BCG myself, but many others have had repeated treatments for recurrences. I am sure someone will be along with personal experience. Best wishes.

My understanding is that most cancers are the result of tissue and cellular insults like pathogens, ROS and chronic inflammation. My understanding also is that the inflammatory condition has to be in play for a long period of time. I believe that my prostate cancer and my bladder cancer resulted from decades of on again , off again inflammatory episodes. I guess the point is that if the bladder cancer is unresolved , then RC becomes the curative path and the worry of improbable prostate cancer from BCG induced prostatitis becomes a moot point. I agree with Rily , in that it’s unusual for a nurse to deal out that type of info at that stage of the examination if at all. Orillia.

Hi Catfan, personally I would almost try to pretend the unwise nurse had kept their mouth shut. They should have done imho!

My husband had pTa G3. G3 is described as aggressive, but I would not worry about the two months wait. We are certain [long story, is in my other posts] he had had it for literally years. He had TURBT, 6 BCG, check under GA due to strictures 6 weeks on, already there was a recurrence so they TURBT'd that there and then. He was then offered more BCG, bladder removal or Mitomycin as equal options. Horrified in mid 70s at the loss of sex and arrival of a bag etc, [he would struggle with that, even if it's fine for some people] he went for Mitomycin. For him this has been successful, for many people more BCG is fine. Since BCG previously upset your partner's prostate, why not ask if the Mitomycin would be an appropriate option for him?

Regards, 

Denby

Hi Rily, thanks for your reply. I do feel a bit misled over it - I think the nurse was trying to reassure my husband but the worrying thing is she had said it just needed burning off and she would have done it during the cystoscopy were it not in an awkward place. She also said it was a minor setback. The consultant also said it looked low grade but he couldn't be sure. I wonder if it then might not have been analysed? It seems they took samples underneath the tumour so that has spared him a second TURBT which is good. I know some have over 20 BCG treatments but I wasn't sure that they usually carry on if there is a HG recurrence. I wish I had gone to the meeting really but my partner said he wanted to go on his own. He seems quite positive so I guess that's good. 

Thanks Denby - I did think they might suggest Mitomycin and I would have liked to go to the meeting but my partner wanted to go on his own. He said BCG was the only non surgical option on offer - I will see if he will ask when he goes for his BCG just to see if that could be tried if he can't manage BCG. The nurse even said she would have burnt the growth off during the cystoscopy if she could have got to it which is a bit concerning seeing as it is now known to be grade 3. I know this misleading reassurance goes on as a patient my partner is now friends with was on his ward when they were both having a first TURBT and the consultant said to the man that it was done and dusted and low grade - no further treatment but it was HG and he had to have a second TURBT and BCG. 

Hi Catfan. I suggest your partner and his new friend should get together and approach PALS to insist the department retrain all staff to stop saying unfounded comments about patients' medical situations. Sounds like a culture in the department as it was a nurse one time and a consultant another. I would call it unprofessional.

Too late for avoiding what was said to both of them but perhaps they can at least save those who come after from this unnecessary rollercoaster. They will feel better if they do this I think.

Denby