Update

Hi jenlids, if you are not too happy about the surgery, please let your hospital know.

It may be your grade/stage or other factors were different.. But my husband had a recurrence straight after 6 BCG and was offered more BCG, bladder removal or Mitomycin as '3 equal options'.

He went for the Mitomycin and that was 5 years ago with no further recurrence. So I do not understand why you have been made to 'feel that Mitomycin has been taken off the table' .

I would not want you to go through the surgery without firmly asking, and spend the rest of your life wondering 'what if?'. If you would find it hard to ask in a way you fear could be seen as challenging, take a polite but assertive person with you is my suggestion, 

Best wishes, and hope you can get clear and satisfying answers, 

Denby

I have very aggressive cancer and they said that, if cancer has come back after 10 treatments, then it means it has not worked, therefore it is not an option. Mitomycin treatment would not be any good either, so they said.

I am waiting on my appointment so will discuss it all with them then

Jenny

No-one is exactly happy about such radical surgery. Initially I was hoping to be able to have BCG treatment, rather than have to have surgery, before I knew my options for sure. In the end, I looked on surgery as the better treatment of the two, for me, and chose that. If that is going to give you best possibility of cure, I'm sure you will come to terms with it. Happy to answer any questions you have. Best wishes.

Thanks Teassewill. I am sure there will be loads of questions. At the moment I am still reeling from the news. 

Hi Jenlids

I hope things are as well as they can be. Your post interested me cos I have recently been through a similar experience. I had/have stage 1 grade 3 , plus cis. I had 2 rounds of BCG neither of which worked although after the 2nd round the tumour was tiny but still stage 1 grade 3. I have been resisting bladder removal for over a year. My surgeon agreed , although he and the nurses said the chances of success were virtually 0 , to a course of Mitomycin. 4 weeks into the 6 week course I had a full scan and it looks like my bladder was/is disease free. This will be confirmed on 5th May when I go in for a check/biopsy. If it is disease free I will be well happy , though still concerned about the CIS. Unfortunately bladder cancer does re - occur and so I am sure I will be told the best option is still removal which I will continue to resist for now, especially if bladder is now for the time being, disease free. I do not know how 'serious' your cancer is ... but It may be worthwhile pushing for Mito...as you never know. Take care

Pienmash 

Hi Jenlids

I was in a similar position. Stage 1 grade 3 . I had 2 bcg rounds and neither worked although the 2nd lot did significantly reduce the tumour. 

As I said no to bladder removal , the surgeon agreed to a Mitomycin course although he said virtually no chance of success...'what is their to lose' he said. 4 weeks into the course I had a full on scan and it showed my bladder to be disease free. I go into hospital for a check/biopsy on 5th may where hopefully this will be confirmed. I don't know what stage you are at etc but it may be worthwhile on pushing for the Mito and see what happens. FYI I had the heated Mitomycin which apparently is more effective. good luck.

Pienmash. 

Thanks for the info Pienmash.

I have stage 3 very aggressive. Had two Turbt to remove 2 large growths, followed by 10 BCG treatments with cystoscopy and scans between. My last cystoscopy showed new growth which he pinched out and I had a biopsy which showed that yes it was cancerous. 

After that, it was discussed at Leicester and they are not recommending any more BCG, or Mitomycin treatments as they think they won't work. Also I will end up with a Cystectomy in the end anyway

The thing is, I am almost 76 so not sure I should be waiting too long for this op. At the moment I am fit for my age but who knows what's around the corner. 

It is a real dilemma for me. 

It does puzzle me Pienmash and jenlids why some surgeons so rubbish a treatment which in Pienmash's and my husband's case has worked so well after post BCG recurrences. At least Pienmash's surgeon was willing to try it, hope that surgeon now takes a slightly less 'anti' view for the benefit of other patients who might be more swayed by the surgeon's attitude.

BTW my husband is now 77 and all this became apparent in 2017, though we're certain he'd had it long before.

Best Denby

ah ok gotcha. Yes , I can see now how the stage of your cancer and your age  plays a part in your decision. It's a tough call. Has Rily replied at all to you as I think he had a 'complicated' diagnosis and treatment options but has fully retained his bladder following a chemo/radiation option. I am sure you will finally arrive at a decision which best suits. Good luck and let us know how things go.

Hi

Surgery is not an ideal option, but it's an option, the door hasn't been slammed shut. I had surgery five years ago and have been clear ever since. You need to make adjustments in life, but by and large I've lived a near to normal and active life since.

Wishing you all the best