Goodbye BCG hello Cystectomy

Hi Lee83,Mine was classed as urgent.I saw the surgeon on the 27th August 2019 and had the op on the 30th September.It must be so difficult trying to assemble the team needed.Jane x

Great to hear you have a plan Leo and not too long to wait but enough time to prepare. Try and keep as active and fit as you can on the build up , will help a lot with recovery. All the best.

I don't know whether uou are male or female.  My Husvand had RC. But had a neo bladder fortunately for him. Also he was otherwise healthy. Yesterday was the 3rd birthday of new bladder. Obviously he has regular checks re. CT. Blood tests & flexible cystectomy. So glad this has become 6 monthly as opposed to 3 months. I wish you well. My husband would be willing to speak with you re. His op. But also ve good yo speak to someone who has had the bag outside of the body. I. So sorry I'm not up with the terminology xxx much love 

I am taking some time out from the forum to work on my physical resilience and build mental robustness and positivity. I will visit from time to time, but less. You can still DM me. Ciao

Very best of luck Leo, we are always here for you when you want a chat. sending you a good hug to give you strength. I know you can do this xx

Goodbye for now old friend. Take care. Garviv

Good luck Leo, I'm sure I speak for all on the forum we are all behind you. Love Lynn x

Well done Leo for making the decision to go for surgery, sounds like it’s definitely the right one given what you have been through with BCG. It’s great you have full confidence in your Doctors and specialist nurse. 
Let us know how you get on

Best Wishes

Correct decisions all round Leo. I was told by both surgeon and stoma nurse that my rapid recovery from the cystectomy was because I had kept myself fit and carried very little excess weight. Keep as fit as possible, a flat belly definitely helps when applying stoma pouches after the op.

Hey Leo, wowzers.

I never had the joy of BCG, my cancer was diagnosed as advanced bladder cancer, although I never had any symptoms or had even heard of/thought of bladder cancer as a thing.

I had a cystoprostatectomy and lymph node removal in late June of this year. Prior to the op, I was given what is called "pre-habilitation". I was seen by a physiotherapist who gave me a load of core muscle exercises to do before the op, to assist with recovery post op (the fitter you are, the better the recovery).

The op was robot assist, which means lots of small entries into you via the abdomen (hence the core muscle exercises) and one larger scar just below my tummy (think bikini line!).

Recovery isn't that long really, considering the scale of the op. I was up and walking the day after the op whilst in ICU and released home within 5days. 

Something to be aware of, or to discuss with the team. The stoma can cause a mild "synch" issue in your gut. In my non medical understanding, the direction of travel of food is confused. In me, it meant I was sick a few times and eating food (even soup, jelly, etc) was not pleasurable until everything reset and worked as it was meant too (all resolved before leaving hospital).

I am young, so having my prostate removed and the associated "difficulties" that can cause is something I am struggling to get to grips with. But, I am sure with support and time, things will become normal. That's a discussion point I think and something to be understood and accepted.

Looking at the other comments, it's a life changer. A uristoma gives so much benefit, although it does take a little time to get used too (not just the administration, changing, acceptance piece). Sleeping through the night however, far outweighs everything else!

Good luck, and here's to your future.

Simon.