New member

Hi Tizz101,

Welcome to our friendly group. A few of us have undergone bladder removal and can help with anything you want to know and support you through if you do need a cystectomy. Best wishes for your meeting next week.

Jane x

Good to be informed in advance, but do keep an open mind about what they might say. Hopefully whatever the options, they will give you time to decide, so you can quiz them about pros & cons etc.. Feel free to come back here & ask any questions. 

Hi Tizz101, whatever you decide to do will be right for you if you take your own personality and habits into consideration.

For example

• I wanted the cancer to be removed because I knew I would not feel comfortable with it remaining in place longer than needed for it to shrink via chemo so it could be easily removed without risk of spreading. (BCG was not an option for me as my cancer was muscle-invasive and aggressive, though the above reasoning would work for that possibility too.)
• Once my bladder had become 'faulty' I didn't feel any need to hang onto it. If anything the sooner it went the better.
• I chose stoma and bags over neobladder because it was tried & tested (old technology) & I didn't want to have to train a neobladder or use catheters (too fiddly).

Fortunately, I knew myself fairly well and am happy with my choice, which I made rapidly. Others may need to write down and debate the pros and cons that I sorted out in my head in about a minute.

Good luck with your consultation.

Latestart

Hi

Welcome to this very supportive group. Feel free to ask anything, no matter how silly you think your question is, we've all been there.

I had an RC 8 years ago and chose to have a stoma, as opposed to a neo bladder. Yes, taking it all in is difficult when you first realise what is going to happen, but you do get used to and I live quite a normal life. Indeed, I'd say that I'm fitter now than I was at the time of the op. Frankly, I was relieved to know that the cancer was being removed. 

Please feel free to ask for more advice, or if you just want to talk.

When I started this journey I told my oncologist/urologist I would chose life and would have no worries about losing my bladder.

Hi Tizz and welcome 

The preservation of life is by far the most important consideration everything else is really insignificant. The day of TURBT while I lay waiting on my legs regaining power after the spinal,  my surgeon came round and she sat on my bed. She told me there and then the bladder had to come out. I looked at her in the eye and I'll never forget saying this to her but I said ' Can you save my life'? She said yes but the bladder must come out. I simply told her do what you've got to do.

I had my RC in February and my stoma is working just fine. Its a different lifestyle but you get used to it. The operation takes a while to recover from but then it is major surgery.

The main thing is iam alive and cancer free. 

Hope all goes well with your meeting 

Best wishes 

Mark

Totally agree - life over a bladder

Being given a grim prognosis made me determined to get through the surgery. The recovery was tough but most of that was due to the pandemic and having to be alone. It was all worth it to be alive and cancer free over 5 years later.

Jane x