Failed BCG

Hi Potter100 . Sorry you find yourself back here. We know recurrences can be common and that BCG does not always work, but some people have gone on to have a successful second round. If a bladder removal becomes the only option, we have others here who can help you with this. It is always difficult waiting for the next round and results, but there will always be someone here to support and help you. Best wishes. 

That must all be very wearisome & troublesome for you. I know that the thought of surgery is daunting, but it could well be a life saver for you. Many of us have been through the surgery & living very full & active lives. Mine was 8 years ago, age 57. Tough at the time, taking months to fully recover, but now seems a relatively short episode in my life.

Feel free to ask any questions.

Hi Potter 100, we think on reflection my husband, almost 75, has also been bladder cancered for maybe 10 years, only the hosp where we used to live took the 'growths' out without mentioning cancer or giving any useful follow up. So after moving and up-in-the-night- got worse and worse, eventually last Sep he got an awake cystoscopy where he says his bladder looked like an inside out cauliflower all the way round taking up half the volume. Then a TURBT, wait for healing, and six BCG just like you. Oh by the way G3 pTa CIS.

So Dr faced us after the next gen. anaesthetic Cystoscopy with "there was already another papilloma [ this is just like you] there we've TURBT'd, will you choose, all equal in my view, more BCG, Mitomycin or bladder removal? "  Shock does not begin to describe our reaction as we basically knew nothing about the whole deal at all, no thanks to anyone there, sorry.

[Another charity group we heard of offer support but only via facebook which we don't do, we even asked someone who does do fb to ask them but they did not even reply] So we went unsupported till I found these wonderful folk here. Anyway we not surprisingly said try the Mitomycin. That has not been a particularly easy road but we feel worth it as far as we yet know, because despite tactless comments like 'get you in ASAP' [how to make your patient worry in one easy lesson] for last cysto, hey presto no tumour so just biopsy for which we await the result. But you can see that feels better than previous time. Hope this proves encouraging and that your team more inspire confidence, rather than cycnicism over their communication skills like ours.

Have you actually had any Mitomycin treatment, don't want to get into the ifs and buts of that if you've already been there? If not I will do.

Do ask any further Q's you have, I realise this is quite a lengthy reply already.

Having said sore things about communication I do think the NHS management have been terribly unfair to senior drs over this pension vs overtime issue-they should hire enough drs not to put them in this position. Then patients wouldn't suffer from waiting lists climbing and teams that are too overworked to communicate better over and above doing the clinical job.

With very best wishes, and do do what you can to promote good health ahead of the 6th Aug, and stay in touch as long as you find us helpful.

Denby

On the subject of support groups, Action on Bladder Cancer has a list of support groups on their website or you could contact one of the trustees of the Reading Bladder Cancer Support Group Trust who will be happy to chat if that's what you wish.

You can find the links on my profile.

CB

... and of course, there is a search facility on this website for groups near you:

https://www.macmillan.org.uk/in-your-area/choose-location.html