Bladder cancer

Hello Teddy822. I went a different route so can't offer any help with either of your options, but let me welcome you to the group. I am sure others will be along to share experiences. Best wishes.

My husband with pretty similar grade/stage, first of all was offered BCG. After 6 BCG and the usual six-weeks-for-it-to-settle, another cystoscopy to check found a new tumour already. Then it was 3 options, same as your 2 plus try Mitomycin chemo-into-bladder. In total shock  at the prospect at loss of marital activity and considering that with frequent monitoring, if the chemo did not work the cystectomy could be done later, he opted to try the mitomycin. That was 3 years ago and the mitomycin has been very successful. Personally I'd try the BCG, it works for very many people on here. Some still have recurrences and carry on with the BCG long term. If it does not work it is worth asking your team if Mitomycin is then an option for you. Hope this helps.

Best wishes, Denby

Hi teddyJames,
Welcome to this group; not that you would wish to a member of course.

As you will no doubt hear, it is a very personal decision based on your circumstances and what’s right for you wouldn’t be right for the next person.

I was S2 G3 and had bladder removal and a Neobladder constructed 9 months ago and all is well.
My surgery initially was going to be as you describe ; bladder, prostate and lymph removal. But my surgeon used a prostate sparing procedure, removing only what was necessary a bit like coring an apple I think she said.
That was successful and I have no erectile problems, so something to discuss with your surgeon because as I say it may or may not be appropriate for you.

keep the questions coming if you have any.

cheers
Chasam

Hi rily.   Thanks for replying much appreciated crazy time at the moment hopefully  will make right decision keep well thinking of you good luck. X

 Hi Denby.  Thanks for replying. So sorry to here about your husband. Good news treatment  is working so pleased for both of you I personally struggle with the catheter when it was in and the running to the toilet when it was out such a difficult decision to make. Hope everything keeps going well good luck. Onwards and upwards. X

Hi Chasam Good to hear from you. This was one club I never wanted to join but I am sure everybody feels the same. Unfortunately neo bladder I have told is not an option for me because position of tumour so its b c g or the full monty. Its just making decision thanks for getting in touch much appreciated keep well good luck. X

Hi Teddyj I had the same options went for the BCG after been diagnosed T1 high grade cancer in October awaiting my 1st flexi on the 29th to see if it’s done the trick it’s hard decision I felt that bladder removal would be a last resort and is there if you need it.Everyone is different good luck in your journey hope all goes well

I had the same dilemma. it's a very difficult choice, you must make up your own mind & don't necessarily do what anyone else advises (except maybe your consultant!). What is important is that it is an informed choice. For instance, RC now is a better chance of cure (maybe as high as 95%) than if done later after a recurrence. BCG might cure, but only around 40% cases at most, although it might defer need for surgery. & who knows what new treatments may be available at a later date.  The problem is that no-one can tell you your personal odds. Then you need to weigh up pros & cons, risks & benefits of each option. Is your priority cure at all costs (loss of bladder & consequent effects), or keeping bladder as long as possible (but gambling with prospects)? Is your age & fitness a factor?

My choice, for various reasons, was to go for surgery. That was 9 years ago & I have no regrets, I have peace of mind. I was able to have neobladder, but I had decided on surgery before considering what urinary diversion to have. Happy to answer any queries about the surgery.

Hi Teddyjames, thanks but please don't worry about my husband, he really is not very bothered about the bladder cancer now. He just got a clear flexi and does not have to have another for 6 months, that's how good the treatment can be for many people. He's much more fed up about other health issues he has and GPs being frankly stupid too often!

He is dealing with the running to the loo at night with two pee bottles [any big chemists likely sell them] which are in a washing up bowl lined with a towel right by the bed. I have put glow-in the-dark tape [£1 on t'web] on them so he can grab one without even putting the light on, cuts down waking me up. Just empty and rinse thoroughly in the morning.

I hope you can become calmer as you consider your options. Will send you a pm [private message]. Remember you can call the Macmillan helplines too.

best, Denby

Hello TJ

It is difficult to choose an option and I knew when the options were explained to me I took the stoma route. It seemed the easiest option for me. Basil my stoma is easy to care for. I did not want chemo either. Now I have six-monthly scans, nothing intrusive which I am grateful for

It is a very personal decision and I hope you choose what is best for you

Inanna x