Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

Failed BCG

Potter100
Posted by

HI all,

        not been on here for a while. Was hoping bladder cancer would take its leave graciously but apparently it seems to enjoy my company. I would appreciate any comments on my current dilemma. I was resected in February this year and the histology showed I had non invasive CIS. This came after a twelve year history of bladder cancer ranging from superficial grade 1, superficial grade 2 and now this CIS which the specialist today categorised as grade 3. I’ve just undergone 6 weeks of immunotherapy and after a five week break had a follow up cystocopy today. The cancer has returned around the base of the bladder. According to the specialist it’s non invasive but I’m now scheduled to go into hospital August 6th to have the cancer removed and a biopsy to be taken. I questioned the specialist as to his opinion of what follows that if immunotherapy has failed. He said that if the biopsy shows that the cancer has returned at grade 3 there would need to be some form of radical surgery as I’ve now had 3 resections in less than 2 years and each time the stage has increased and CIS can be aggressive. He then offered an olive branch by saying if the grade is lower than the previous one they could resume the immunotherapy. However, he told me not to book any holidays as this is unlikely. There was a lot to take in at a time when my head was spinning. Anyone been in a similar situation or could shine any light on my best way forward please comment as I would appreciate any insights from those who have gone through this and by inference have lived to tell the tale. Ps I am now 61 and fit and healthy apart from my aforementioned uninvited guest!

rily
Posted by

Hi . 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. 

Best wishes to All,   rily.  What is a Community Champion ?

Teasswill
Posted by

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.

Denby
Posted by

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

Crustybladder
Posted by

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

What if the Hokey Cokey IS what it's all about?

Crustybladder
Posted by

... 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

What if the Hokey Cokey IS what it's all about?