Muscle-invasive bladder cancer

Hi Mazoka, I'm sorry to hear of your diagnosis but I can assure you that you are definitely in the right place. I don't have any experience of Radical cystectomy but there are lots of lovely folk on the site who have been through the surgery and are living full lives. I'm sure someone will be along shortly to share their experience and give some advice.

Sending you lots of love, Ade xx

Hi Mazoka,Welcome to this friendly group.It is a big operation but you can have a good life once you have recovered.I had mine over 5 years ago and am cancer free.I’m sure the men will be along soon to offer support and advice.Feel free to ask any questions we are all here to help.Best wishes Jane x

Hi Mazoka

I had robot assisted radical cystectomy just over a year ago and am back to living normally. The only inconvenience is a 15 minute daily change of stoma bag which has now become routine after showering.  Its major surgery and exhausting at first but I was pretty much back to normal after about 12 weeks.

I opted for the surgical route after seeing an old pal of similar age go through TURBT then repeated BCG over a period about three years before being told cystectomy was recommended urgently. Note though he was unlucky and BCG  does work for many many  people. However seeing how well he recovered from surgery and after a lot of thought and discussions with surgeon, wife and family I opted for the surgery.

Influencing factors were firstly my age. 77 at the time. Did I want my later years blighted by Chemo and with some other health problems would I survive major surgery in later years. Secondly a bonus removal of an enlarged but benign prostate that increasingly  had me up in the night. Thirdly I just wanted any trace of cancer removed as quickly as possible from my body.

I’m happy with the outcome, feel I made the right choices, and can sleep soundly albeit connected to a night bag. 

I believe the biggest factor when making such a life changing decision is your age and for some a fear of surgery. 

Good luck and hope this helps

Hi Mazoka, I'm a 72 year old female who had my bladder removed robotically just over 2 years ago after 4 rounds of chemo.

As others have said it's a big operation but doable. For me the benefits have been:

1. the cancer has gone,
2. I sleep uninterruptedly at night because of the night bag  (holds up to 2 litres of urine) and
3. I quickly learnt to manage the stoma and stoma bags. I empty them regularly and change mine every 2 days by the way (and my stoma nurses told me that some people can manage it every 3 days). My skin is quite sensitive but copes with the 2 day gap.

I also had some immunotherapy post op, although couldn't complete the proposed 12 month course. And I have had excellent follow up by both oncologist and the surgery team that did the op.

My husband and daughter have supported me throughout and are also pleased at how we have come through it. I expected that would be the case but they have been surprised and pleased.

I am slightly less fit than I probably would have been without all of the treatment and keep walking and exercising daily to keep improving.

Overall, I am very happy with the process and the outcome so far. 

Hope that helps,

Latestart

Thank you furbabymama, much appreciated.

Best wishes

Mazoka.

Thank you for your reply Jane I really appreciate it.

Best wishes

Mazoka.

Thank you for your reply Stapled, your details sounds very similar to myself 

Best wishes

Mazoka.

Thank you for your reply Latestart, it has helped a lot.

Best wishes

Mazoka.