Treatment

Hi . We know the usual procedure is to have a look inside your bladder after the BCG treatment is finished and then see where to go from there. We also know that it is not unusual to have appointments in the wrong order, especially where different hospitals are involved. Have you spoken to your nurse about this when having your treatment? Best wishes.

Hi Tat1965 and welcome. Given your stage/grade are similar to my husband's, by his consultant's view you certainly don't need to be considering bladder removal at the moment unless of course it is your preference. [OK it is for some people] Yes after he had [well before covid] had 6 BCG and already had a new growth by the time of his flexi 6 weeks later, the consultant said he could choose between carrying on with more BCG, trying Mitomycin or bladder removal. My husband was horrified at the idea of losing his bladder and masculine functions without trying an alternative. So he opted for the mitomycin, and though there have been minor hitches, well over two years on he still has everything and just gets regular check-ups. So please don't feel you must be bounced into something major and irreversible without asking about alternatives. Even if as for my husband the BCG doesn't work, as you indicate no-one knows yet, it may well do for you. I hope it does. At the beginning my husband said his bladder looked like a complete inside out cauliflower full of growths, and here he is now with it clear.

Best wishes, Denby

With Grade 3 non-invasive, the NICE recommendations are to offer either BCG or surgery, as at that point there are different rates of success with the different options & potentially very different outcomes. Many consultants seem to only offer BCG without explaining the alternatives & implications of each. It may be that you have been referred to a more specialist unit to discuss options further. 

I am one who did choose surgery for (among other reasons) wanting best chance of cure. It is a very hard decision & each one of us will have their own priorities & reasons for choosing which path to follow. 

Hi Tat1965, you've had 3 great replies here from group members. Rily is right it may just be the standard NHS appointments are in a mixed order particularly during a pandemic, Denby is right there are many other options to cystectomy even if BCG doesn't work which seems unclear to me without having had a cystoscopy. Also Teaswill is right, with a high grade it's definitely worth hearing from a consultant about all the options even if only to decline them. If you are lucky you may have a Clinical Nurse Specialist who are the bees knees when it comes to explanations? Hope so, I'd be inclined to phone and ask. Sending love. x