The big question is coming up

It is possible that your consultant would say simply stop the BCG, then have close surveillance. I'm not sure if the side effects will fade, or there may be medication to alleviate them. That's certainly something to ask. You wouldn't be throwing in the towel, you would be making a positive decision about your future.

We've already aired some thoughts about going to RC in other threads - as you know, my feelings were much like Hopeful's. Perhaps try writing down a list of pros & cons, both medical and personal. If you have any more questions about aspects of life re RC, ask away. Best wishes.

Hi

I had an RC seven years ago and chose a stoma. Yes you can live a normal life after and in fact, combined with retirement, my life is very active. I won't say that there are adjustments to be made and it can have an effect on your sex life (sorry to be blunt), but by and large things are fine. Follow ups are quarterly for the first year and six monthly for the next four. NICE recommend 4 CT scans for the first two years, but that depends on your personal circumstances and mine are ongoing (long story).

The RC sounds daunting, but with right preparation and care it isn't as bad as people think it, I was in and out in seven days. You're given full training on after care and it's surprising how quickly you adapt. Normally they have you up and out of bed the next day, but it's important to take it easy when you get home. I found a regular nap in the afternoon helped, but looking back I never realised how fatigued I was at the time.

Now everybody's experience is different and I've had issues, but generally everything has been fine.

Hi Leo,I think if they cannot find anything to relieve your pain and discomfort you will be better off with a cystectomy.

I didn’t have a good quality of life with Interstitial cystitis and was told in 1997 that my bladder would need removing in the future.

My regret is that they did not do a cystectomy before I developed cancer.I am so glad to be rid of years of pain,frequency and infections which often left me housebound.

I hope your consultant can help you with your decision.

Best wishes Jane x

Think you just have to ask the consultant their professional advice and take that on board. I was lucky I feel that they were honest and advised me to go RC given his vast and many years of experience. Saying that I think many consultants have different opinions. Take their advice but what's best for you is always the key answer. You have to be I would say 90% sure, I feel you can't ever be 100%, maybe I'm wrong with others point of view on that. 

Best of luck Leo.

The big question has now been answered. No more BCG but a RC. I am relieved. Hopeful786  Next step new CT scan, final magic eye, meet the surgeons,  pre op assessment and procedure using robotics. Leo

Good Luck Leo with your forthcoming procedures. We will be with you all the way. Garviv

Hi Leo. I’m so glad that you have made an informed decision. I’m sure you’ll do very well  after surgery and no more BCG side effects that you’ve had so far. My very best wishes to you. 

 Hopeful786 thank you! The consultant skilfully guided me in the RC direction. Good man and sound judgement.

Hi Leo,You will be able to get on with life once you have got over the surgery.I’m glad you are feeling relieved.Best wishes Jane 

Hi Leo,

Best of luck on your upcoming operation. You've really had a bad time with your BCG treatments, so you must be relieved.

Take care.

Trevor