Bladder Cancer treatment options - alternatives to a cystectomy? Immunotherapy? Royal Marsden? Barts? Others…?

Hi Bumblebee 49

my partner 75 next month,  has also been diagnosed with grade 3 muscle invasive cancer only last week, after self catheterizing for the last two years, this following a procedure in 2019 that was not followed up due to covid.

we are both numb at the moment, he went for a pet ct scan last Thursday and we, like you are waiting for the team to decide the best course of action.

neither of us want the surgery if possible, we were together as teenagers but drifted apart, then by chance we met 6 years ago after 52 years and we had so many plans to make up for lost time in our years remaining .

We feel cheated that this cruel disease has come to us.

Can see why you feel cheated.  Hope the PET scan results are good.

Denby

Hi Magnus

I was told about the treatment you mentioned by a dear friend he found in daily mail I believe.

I asked my consultant in August as I have had 6 chemo, 21 BCG treatments and 10 turbts to date the last CUS arrived after the camera before my op lucky me.

The consultant said it was a trial and fir someone like myself it would not eradicate my cancer as I had missed the boat.

It was not used by many local hospital but he expressed he had used it for terminal passed treatment.

so I decided not to waste any more time as my journey had been 5 years now and percentages change along with other issues.

Im really very lucky my oncologist nurses are excellent and they contact me regular to check on me and always listen to my point of view.

The hospital I go to is a 90 minute drive I stayed with them when I moved because I feel confident I’m looked after.

Im sorry your not getting that from where you go, it’s really important ti feel confident in the urology department who look after you.

I wish you well I have my surgery 20th in a couple of weeks.  I’m 67 and keep active so the hardest will be rest, rest and more rest I don’t usually have time to stop or slow down.

Take care Magnus 

Lorraine

It's really terrifying and I still cannot believe I have cancer but there you go, how we will cope with all this. 

Hi Magnus my husband In October last year had a radical cystectomy luckily although 63 at the time he could have a neo- bladder they did say they would take prostate as that would be 1st place it would go to. Whilst having trials done to make sure his body could cope with the surgery.  They told him , he could have an op to tie off prostate,  obviously your infertile but him at 63 wasn't bothered he had this done 2 weeks to major surgery. So obviously sex wise you need a loving partner prob, viagara etc. The nurses will help you with all this xxx  

I know doesn't life seem unfair. Let's hope we get through this and there is alight at the end of this tunnel and we can carry on with our lives like some have been lucky enough to do.