Bladder Cancer treatment options - alternatives to a cystectomy? Immunotherapy? Royal Marsden? Barts? Others…?

Hello Magnus and welcome to the group. We have had members who have successfully had Mitomycin treatment when BCG has failed. This is a chemo treatment and administered in the same way as BCG. There are various other immunotherapy drugs used for BC, but we don't see them often on here. Do you have an oncologist to discuss this with ? Best wishes.

Hi Riley,

Many thanks for that.  The hospital I am being treated under are…let’s just say less than helpful, particularly the individual oncologist I have been allocated. My guess is that they are dogmatically sticking to NICE rules so just offering cystectomy. I have tried very hard engage with them but to no avail. Thus, I am currently seeking an alternative oncologist, consultant, cancer care team and hospital with a more open minded and patient caring approach that hopefully can also offer some real alternatives. Time is ticking - I haven’t had a cystoscopy since my last op six months ago so my concern is rapidly increasing. Any suggestions for alternative cancer care teams?  Thanks again, Magnus

Sorry Rily about the spelling of your name earlier - good old predictive text!

Hi Magnus. I was fortunate to meet a good oncologist who advocated bladder preservation where possible. I am up North so no knowledge of care in your part of the world. The only thing about changing doctors is that it causes more delays. I hope somebody here has the experience to offer some advice. Best wishes.

Hi Magnus, My OH (Pta G3/CIS) had recurrence straight after Turbt + 6 BCG. Was offered in a leading S Yorks Hosp "3  equal choices; more BCG, bladder removal, Mitomycin" Shocked and horrified at end to all trad sex [I know people enjoy themselves in other ways, but...] he opted for the Mitomycin. That was 5 enjoyable years ago. And he's a lot older than you. Down to 6 monthly checks for some time now.

So I'd persist in telling them that you wish to try this unless they can convince you with full explanation why not. You may or may not also be interested in healthy lifestyle measures which some consider useful.

Don't forget you can friend request by clicking on a person's name, then clicking 'connect', if you wish to have a private message conversation with any forum member.

Best wishes, Denby

Thank you so much for that information Rily - greatly appreciated.  

All the very best, Magnus

Hi Denby, Thank you so very much for that - extremely helpful.  I do need to change hospital and cancer team - I have absolutely zero faith in them and the way they treat we cancer patients is so unprofessional and inappropriate - just shockingly bad. I will try for the Mitomycin with my new hospital/cancer care team though - thanks again.  

All the very best, Magnus

Hi Magnus. Just in case you may have missed it, you have had a reply from one of the nurses in the expert section. You can see it by clicking HERE . Best wishes.

Hi Magnus,Welcome to this friendly supportive group.I hope you can find a decent hospital/team that you can place your trust in,it’s so important.Best wishes Jane

I am really interested in what you can be offered as I too am 62 and have been diagnosed with Grade 3 PT1, just had second Turbt last week and have to wait another week for the follow up appointment to see what the plan will be. I am terrified the only option will be removal and I just hope they will give me a chance to have some treatment, Denby always give me hope when I hear from her on her. I just hope the team I am dealing with in Bromley Kent have a few options and not just one. It's all such a waiting game, this started in June its been a long 3 months. I think all this stress doesn't do you any good.