BCG or Radical Cystectomy?

I am in exactly this stage, i.e., required to decide between BCG or RC. My diagnosis is pG3T1 with potential focus of squamous differentiation (which makes it more aggressive).  Had 2nd TURBT and meeting consultant this week to make decision. Its really difficult to decide, but in my case probably going to opt for RC.

I have a post running on the issue - G3T1 with Squamous Differentiation?

Good luck with your decision and remember, what you decide ids right for you at the time you made it.

Thank you I will check out the post.

Hi Pugmummy. I note you've spotted my post a while ago about this sort of choice. Have you thought of asking your team about the Mitomycin? For no reason I can understand it seems some hospitals simply don't mention/offer this. It's one reason why I sit on here 4/5 years on just to make sure people in a similar situation know there is this third alternative. BTW some letters have mentioned CIS as well as G4 Pta

The other thing I have gleaned over the years is that while BCG may seem to 'under' treat, it's more like weedkiller on a path: every now and then a new little one or two or more sprout and you have to treat the path again, it doesn't mean it's a failure it just needs re-doing. We didn't know that at the time that Mr D had had 6 BCG and already had a single new papilloma at the 6-weeks-after flexi. If we had known, he might have carried on with BCG. But not knowing we took it as a sign of "BCG failing" so took the offered switch to Mmc.

Fat lot of info did we get from the staff to help choose I'm sorry to say. Another reason for staying on here.

Best, 

Denby

I too had the same diagnosis and dilemma. I was given higher percentage chance of cure with RC ( 80%) than BCG and did not want to have the multiple treatments cystoscopies over 2 years with the high possibility of recurrence and an increasing risk over time that RC would not then be possible. On removal of my bladder no residual cancer was found after RC but the start of low grade cancer in my prostate which was also removed, which I would not have been aware of with bcg. 
RC is a substantial operation and challenge. 5 months on , I am getting used to my bag and have recovered some 90%.

it is a hard and difficult decision and I agree with the under and over treatment view but I am content with my decision which was supported by my consultant.. 

I went with Bcg, was diagnosed last year with grade 3 PT1 and CIS, I had 6 bcg and three mytomicin, heated in the bladder, it was called Di Stasi induction. Had a clear result when checked in March and another clear camera in June. I will continue with bcg maintenance. I felt so distraught when faced with the same decision as yours, I just really did not know how I would cope with the operation, a stoma and all of the challenges it brings. I know some people on here have coped so well. I know I have the chance it will come back but I am managing to carry on with life, I have always continued to work and enjoy my grandchildren. It really is difficult as it's a place you don't want to be anyway and I was so shocked when diagnosed, just never thought it would happen to me type of scenario. Anyway still here a year on, in a better place and have taken on lots of views from this forum to help along the way. Good luck. 

Tortoise said:

My diagnosis is pG3T1 with potential focus of squamous differentiation (wh

Thank you Denny

Thank you Ivan. It’s a big op but am tending to go for the RC. It’s just the stoma frightens me. 

Hi Pugmummy 

Can you share what you are particularly frightened of with regards to the stoma and maybe we can help reassure you? I’ve had 2 stomas (one of them a urostomy) for nearly 3.5 years so am well used to them. 

Sarah xx

Thank you Sarah. It’s the thought of having this red horrible looking alien permanently sticking out of my tummy and all the faff of looking after it. Sounds vain I know.  The op will probably save my life. It’s getting head around it x 

I completely understand the fear of the unknown. It might surprise you though to find out that stomas are not all the same in looks! 

I was shown pictures by the nurse before my surgery, but the reality was very different and neither of my stomas protrude at all from my body-they are both flat to the skin, but I appreciate that is not usually the case. Yes, they are red in colour, but I was amazed at how quickly I accepted them. My surgery definitely saved my life so maybe that’s why I accepted them so quickly.

I have 2 to look after, but you quickly get into a routine of managing the stoma-it’s just going to the loo in a different way at the end of the day. You can’t control a stoma of course, but you will find your own routine for coping and it really doesn’t take long each day to look after them. You are simply regularly emptying the bag in the loo (the bag has a little tap at the bottom) about as often as you used to go to the loo, and you don’t need to change the bag every time, or even every day.

It can take time at the start as the stoma heals and settles down, to find exactly the right product to suit your needs-there are many different types of bags for example-but once you do, then it is very straightforward. I can shower, wash my hair, dry it and myself, and change 2 bags in 30 minutes, so it’s not too much extra faff in my day! 

For me, the reality was much better than the thought of what it might be like.

Sarah xx