New to all of this

Hi Th7b24208,Welcome to our friendly group though I’m sorry you find yourself here.I hope someone with the same result will be along to help you.It’s a supportive group so feel free to ask any questions.Best wishes Jane 

You are understandably somewhat shocked by all this. I can recall the sick feeling when my consultant mentioned the possibility of needing bladder removal. Mine was Grade 3Ta, but no CIS. After much deliberating, I actually chose surgery and have no regrets. 

It is a weighty dilemma and you need to be well informed about the risks and benefits, pros and cons, side effects and likely chance of cure before making your choice, in the light of your own personal circumstances. BC is highly liekly to recur, and to progress to become more dangerous.

You will hear from people who have been in a similar position and doing well, or maybe tried BCG and gone on to have surgery later. (My consultant old me, 14 years ago, that about 50% patients having BCG ultimately have surgery anyway.) You will not hear much from those who didn't do so well, because alas, they became incurable. 

Very best wishes making your decision.

I was diagnosed with G3pTa back in January 2025 and after consultation decided to go the BCG route. As has been pointed out it's best to be fully aware of all the information that's available before making your decision. There's lots here at this sight and your specialist will go through everything when you ask.

I too was offered removal as an option but chose the treatment first as an operation of this size is quite invasive and I'm a very active person and didn't want to be laid up for a while and of course with regular check ups I have the operation as a back up later on.

A far as I know the odds of recurrence after BCG are a Teasswill has mentioned in their reply. So 50% chance of recurring.

It's a difficult choice and I wish you well with your decision.

best

Rob

I had a 5cm tumour G3 T1 with small cis  remove two years ago next month. I've have had 15 BCG treatments so far and all my checks have been clear I am due to get next 3 treatments starting 15th November. Wishing you well on whatever treatment you choose. Lynn x

Hello

I hope you  do not mind me asking. I saw the consultant on Friday. Although he could not say which treatment to have , he did say I was young 64 year old female and would I want to go through the turmoil of having test every 3 months. If I have my bladder removed the survival rate would be 90%+.

My mind is all over the place at the moment. 

Please could you share with me your own experience and what I could expect. 

Thank you 

Best wishes

Yes, among other reasons I wanted peace of mind & to get on with my life. I felt that time off work for BCG treatments over 3 years would equate to surgery (having 3 months off in one go) and give greater confidence of cure. My fear with BCG was it not working, maybe needing chemo & surgery, apart from all the repeat cystos and so on.

I was able to choose neobladder (reconstruction) although many opt for the simpler stoma anyway. I had no significant complications, 7 nights in hospital. Initially I was very tired and weak, but gradually improved. At 6 weeks started going out to leisure pursuits & phased return to work at 3 months. By 6 months was doing my normal week, but it was about 8 months before I finally shed end of the day fatigue. Clear post op path report gave me 95% likely cured (now 14 years on I am deemed cured).

Whatever urinary diversion you have, you learn new toilet habits. There can be an impact on sex life to some degree - especially for men. There are risks of course, as with any surgery. Happy to answer any questions you have.

I thought I'd also respond after Teaswill as I have a stoma. I was not offered BCG as my cancer was muscle invasive. I was 69 at the time and very fit despite osteoporosis. It was a shock as I'd given up smoking in 1974 - just after my mother, a heavy smoker, died of bladder cancer that was found too late to treat. However, I decided immediately that I wanted the cancer removed at once (or as soon as possible) and that meant losing my bladder.

I had 4 cycles of chemo and  then the cystectomy and a stoma formed. I knew myself enough to know I didn't feel confident having  a neobladder which I should have to train so it would hold enough urine.

I do not regret my choice or miss my bladder at all. The stoma works well and learning to deal with it was fairly straightforward. The night bag is excellent and I get a good night's sleep.

My family helped me a lot along the way and still do. In return I stay optimistic,  keep fit and don't make a fuss. Everything has worked out very well. After the operation I also had 3 months of immunotherapy but had to stop then as it caused peripheral neuropathy, which they treated with steroids.

It is nearly 3 years since the operation and I'm now checked every 6 months. No one can tell I have a stoma and it doesn't cause much trouble. Good luck with your decision.

All the best,

Latestart

Thank you for you reply.

It's reassuring to know your neobladder has been successful for you. 

I think it is the thought of the operation that is worrying me. I have not confirmed I will have my bladder removed yet. My emotions are all over the place. 

For my anxiety I think having my bladder removed would be the best option. The BCG treatment is a long road and also the fear of reoccurrence. 

Best wishes 

Being apprehensive is perfectly natural. I felt it was a choice of two unpleasant, potentially risky alternatives. Having chosen surgery, I rationalised that it was controlled trauma to a relatively fit body, as opposed to emergency surgery after an accident, or essential related to debilitating illness. Getting as fit as possible beforehand does help with recovery. 

I think most people find that the experience is not as bad as the anticipation. Best wishes.

It’s natural to be worried at the thought of surgery.I was very anxious beforehand but it did not turn out to be nearly as bad as I expected.I was in less pain after the cystectomy than before it.Recovery is slow but if you do go ahead you will get support here to get you through it.Love Jane x