Radical cystectomy

Hi margben and welcome to the group. Sorry to hear your BCG has not been successful. We know some people have another go at BCG or alternative treatments to see if that works. Some people here have opted for bladder removal and will be along to share experiences when they pick up your post. Feel free to ask any questions or concerns you have. Best wishes.

Hi margben,
Sorry you’ve had to join this forum.

The thing that you unfortunately have found out is that bladder cancer has a bad tendency to come back. 
With that in mind I made the decision to have my bladder removed last year rather than chemo/radio therapy. I was stage 2 grade 3, so a bit more advanced but think I would have made the same decision with T1.

Living without a bladder or in my case, living with a NeoBladder is not the end of the world and gives the best long term prognosis.

take care
Chasam

I was TaG3 & actually chose bladder removal rather than try BCG & risk recurrence. There are those that have persisted with BCG (or similar treatment) & are still clear, but it is a gamble. If you prefer to follow a path that is more likely to be a cure, then bladder removal, albeit a major procedure, is certainly worth considering. I had mine over 9 years ago. It does take months to fully recover, but now seems a short episode in my life. Happy to answer any queries you have.

Hi Margben, welcome too. As you see from other replies, what is 'doing the right thing' is different for different people. My husband's G3 pTa had returned even by the cystoscopy 6 weeks after his initial 6 BCG. His consultant blandly offered what he called an equal choice between more BCG, bladder removal or trying a chemo treatment called Mitomycin. My husband was absolutely horrified at the idea of losing his bladder and all masculine functions. So he immediately opted for the Mitomycin, given into the bladder just like the BCG. That was nearly 3 years ago and it has worked really well, even though he struggled to keep it in his bladder for the recommended hour each time. Minimal side effects and still got everything. And if a recurrence were to be muscle invasive forcing bladder removal in future, well we have enjoyed his keeping everything for a significant extra number of years.

The time I have been on here seems to demonstrate that for unclear reasons some doctors simply do not mention there is this third alternative of Mitomycin [or similar chemo alternatives], so their patients are not necessarily making a fully informed decision, without being aware of the fact.

I wish you well as you consider your options. Denby

Hi margben,I had radical cystectomy with Ileal conduit 16 mths ago.My circumstances were different in that I had chronic bladder disease for over 30 yrs before developing cancer.I am managing fine with the stoma and don’t regret having the surgery.It is a big operation but we are all here to help and support you and answer any questions.Love and best wishes.Jane

Thank you everyone for your replys, I have decided to have a stoma bag on, spoke with friends and family and they also agreed I was doing the right thing, I just didn't want the wait again after having the BCG treatment and waiting for the results to come back just left me very stressed out not knowing if it had come back again.

I certainly have peace of mind after my RC. Plenty of experienced bag users here to give advice if needed. In general terms preparing for the op, get as fit as you can - good diet, exercise etc. Think about immediate post op suitable clothing (soft, elastic/drawstring waist, easy wash & dry), food (you will only want small quantities but frequently - concentrate on protein & carbs), help with housework, shopping, laundry etc. Oh, and light entertainment for while you are resting & recovering!

Thank you for that, I,m a good weight, eat healthy and I,m always out for walks with the dog, also some excercise indoors as well, I,m on an enhanced recovery program with the hospital, different things to do before I go into hospital to aid my recovery quicker, just a little nervous at moment though.

Hi margben,I think it’s natural to feel nervous before the operation.I had the surgery in Bristol,they were very good.I was offered plenty of pain relief afterwards but managed on paracetamol as was too sick on morphine.My sister came to look after me for the first few days after the op.I had to borrow her trousers to wear as mine wouldn’t fit over my swollen stomach in hospital.I haven’t had any problems living with the stoma.The stoma nurses were helpful and you are not usually discharged until you can change the bag unaided.It was much easier managing the stoma at home.In hospital there were tubes and drip stands that got in the way.I tried to walk up and down the ward most days holding the rails.I lost a stone in hospital and was discharged after a 9 night stay.You sound fit and that will help a lot.I hope it all goes well.love Jane x

Thank you everyone for your kind words it really does mean a lot to me chatting to people who  have been through the same thing and knowing there is a light at the end of the tunnel.