Information about Bladder Cancer

I was diagnosed with pTaG3 (i.e. aggressive cancer, but only in the first layer) with evidence of CIS (aggressive pre-cancer cells that lie flat on the surface) in January 2014.  I had two TURBTs to start with, and then BCG treatments since.  All bar one of the biopsies taken following each set of BCG treatments have been clear, with a very small amount of CIS in one.   Unfortunately the disease and treatments have combined to significantly reduce the size of my bladder, and I may not be able to continue with the last year of BCG.  I will have regular monitoring through urine cytology tests and cystoscopies, and hope the cancer and CIS don't recur.

I found the following publications online, which you may find useful:

UK Guidance for the treatment of bladder cancer:

baus.org.uk/professionals/b...

European Association of Urology guidance for the treatment of non-muscle invasive and muscle invasive bladder cancer:

baus.org.uk/_userfiles/page...

baus.org.uk/_userfiles/page...

Guys & St Thomas Hospital leaflet regarding maintenance BCG:

guysandstthomas.nhs.uk/reso...

There are two UK websites for further information and support:

fightbladdercancer.co.uk

actiononbladdercancer.org

Chris

6 Replies

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  • Sounds similar to me Chris, have you had the 'recommend bladder out' conversation with anybody yet?

  • Yes, after a small amount of CIS was found in one biopsy, but I was transferred to another consultant who would have done the op and he said he couldn't justify removing the bladder & prostate for such a small amount of CIS that had been removed anyway.  I'm due a follow op meeting soon, following the last inspection op & biopsies, so I'm sure we'll discuss it then. You know that a cystectomy is the best way to be permanently cured, but the loss of the bladder and prostate is such a heavy price. Think I will be lucky to avoid a cystectomy happening at some point though.

  • I am with Southampton University Hospital and have requested a cystectomy in July. I don't want this cancer coming back in another form (prostate,bowel or bladder). I would rather have a stoma and bag and cancer free. I have the consultant interview in May (with results of my forthcoming rigid cystoscopy. 

  • I can understand your decision. I am thinking about whether I've got to the point where I should do the same.

  • My decision was made when I talked to the cystoscopy nurse who carried out my chemotherapy treatment. These nurses are a host of information concerning urological problems. She made up my mind for me and gave me all the details about the operation and afterwards. 

    Good luck mate and stay healthy

    Roger

  • Good luck yourself.

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