High risk bladder cancer diagnosis

Hello Pegasus and welcome to this friendly and supportive group, although sorry you have bladder cancer. Many of us have been there. There are various treatments as you know and lots of experience here of most. Some people go for removal to try and get rid of it. Others go for BCG or similar. All treatments can be successful. I went a different route, but I am sure others will be along to share experiences. Best wishes.

what route did you choose

thank you and congratulation on clear checks

Hi Pegasus . Mine was too far gone for BCG. I had the option of removal or radiotherapy.  chose the latter as I wanted to keep my bladder and so far so good years on. If you have been offered BCG then RT would not be suitable for you. Best wishes.

I am in the same situation - G3T1, but with squamous differentiation in my case.

Trying to work this through, and realising this is a difficult decision. Although I said to consultant at the outpatients appointment that I would prefer to conserve the bladder and go with BCG, after  doing some research post OP meeting,, i am now seriously considering RC with ileal conduit for better long term outcome in my case.

We are al different, so there are no right or wrong answers .. its just what you consider to be what's right for you.

I have mainly used info from this site as well as fight bladder cancer and action bladder cancer to help me understand. NICE also have a diagnosis and management guidance document which has helped.

Hi janine

so sorry on your diagnosis most of the members on here feel your pain and anxiety as we have all been exactly where you are. 
I was diagnosed last September with invasive bladder cancer I was offered only removal/chemotherapy. I was going to have the ‘bag for life’ but after discussing a reconstruction with my consultant this is what I opted for. I had my op at the end of January 23 it’s been a long road to recovery but this will be the same which ever option you choose to have. with any big operation there are risks and complications and everyone’s outcome may be different. My histology came back clear so I didn’t need chemo which is what I was dreading the most. 
There’s lots of things to think about and discuss and you’ll need lots of support from your loved ones. There’s lots of us on here so don’t hesitate to ask. It’s your decision at the end of the day and the support on here is fantastic. 
Looking back I’m so glad I had the reconstruction as I think the stoma would have made me so depressed on a personal level. 
i hope you get sorted out asap and anything you want to know just ask. Sending  

I’m blown away by people’s bravery on here. Thank you for all reply’s

how is the reconstruction is it difficult to manage

Thank you for getting back to me. 
I just keep reading and the more reviews of BCG the more scared I become.

I wish you all the best in your choices

Hi. I’ve been so lucky I’ve been continent reallly since they took out the catheters 3/4 weeks after op. They take out he suprapubic one first then a week later the normal one. The neo bladder itself can be tricky but once you get used to the sensation of being full etc it’s easy to manage. I carry a catheters ( about the size of a mascara) with me everywhere I go though just incase. 
some days I struggle to empty fully so I do use the catheter to empty to avoid infection etc. and I do use them when I wake during the night which is only once now and first thing in the morning. it’s not difficult or scary it’s just what you have to do and face the fact this is part of my life now. It’s still new to me and I’m learning week by week that not every day/ week is the same some are better than others but it beats having cancer. 
It’s life long care with check ups 3/6 months blood tests etc. and it’s just peace of mind. My consultant and his urology team are absolutely fantastic I couldn’t ask or wish for better.