Choosing not to have bladder removed

Haha..well I was brought up in the Elephant n Castle so pie n mash was a weekly and I often crave for it. Thanks for your detailed and open response. My current thinking Is to follow in the footsteps of your husband until and If it becomes invasive and then I will have a serious re-think. Your point about quality of life is bang on the money and of course some / many will say you wont have any quality If you are dead...but subject to what the surgeon says and based on the research I have done , on balance I am willing to take the risk. bluntly I had had a v traumatic 10 years and every second of every day seemed like walking thru mud. Then when I took certain actions and started to feel good about life again...I got hit with kidney cancer(one removed) and then bladder cancer. I just want a few years to really enjoy life and I am pretty sure having my bladder removed will send me spiralling down and not sure I will recover. Anyways , glad I got that off my chest...and thanks again. Will prob ask more questions after my meeting with the surgeon. 

ooh the memories Pienmash, I lived on Denmark Hill and used to commute on the 68 bus to and from Lower Marsh 3 days a week and Waterloo station 2 days a week. My cousin and a few friends still live in Sydenham and nearby. Who knows about liquor? or jellied eels? [mmmm]. Is East Street market still as lively or the North Peckham as dodgy I wonder? My doctor's was on the Wyndham, not a pleasant walk. I lived first in that area next to Burgess Park, happy days!

Denby

Well I never.....I used to get the 68 to walk down Red Post Hill to go to William Penn School. Ha ha. Played footy at Brockwell and Burgess Park. Went home 6 months ago and East St was buzzing. I lived on John Ruskin St. Happy Days Indeed...

Well blow me down..I used to go to Bethwin Rd church and visited an old gentleman from there who lived on John Ruskin St...I see the church is still going, you have prompted me to an enjoyable google-maps and street-view browse of old haunts. Glad to hear East St still buzzing.

Denby

Hi Pienmash,

My partner was advised to have cystectomy following his initial diagnosis of grade 3 bladder cancer. I think it was because from his scans, they believed it was muscle invasive and had possibly also spread to the ureter. He argued against this (having had one TURBT he was referred to another hospital without explanation and when he attended his appointment was horrified to find himself discussing whether to have a neobladder or stoma). The surgeon agreed to do another TURBT and in fact concluded that it was PTa, G3 and he was able to start BCG. He has had a rigid and flexi cystoscopy which have both been completely normal in the year since diagnosis. 

We are facing a possible dilemma now as following a routine CT scan, they referred him for an MRI scan of the prostate and now seem to think he has a separate and unrelated prostate cancer. He is due to have a biopsy shortly. I guess it is possible that they will advise cystectomy and prostatectomy as the best treatment. I think he may accept this as the stress of them finding new issues is really stopping us having any enjoyment of life. He had felt very strongly like you that having had a very difficult few years (not health related), that having a stoma would send him into a spiral of depression plus the likely loss of sexual function. I think time can change how you feel about these decisions - I guess it is weighing up the uncertainty of ongoing cystocopies against major surgery with potentially more peace of mind longer term. It will be his decision but having started from a position of saying he would never consider it, he did say recently that if that is recommended, he will go ahead (more for others than himself).  

There is a good website called BAUS (British Assoc of Urological Surgeons) which has a section about the shortgage of BCG and within that they have a table which sets out what they are going to recommend for patients if BCG becomes very rationed. It does cover use of Mitomycin as an alternative - I am not a medical person but it seems to suggest that it is not as effective as BCG at stopping progression (but is good at stopping recurrence). 

Best Wishes.  

I meant to add that my husband is 56.

Thanks Catfan. I hope for the best possible outcome for your partner. I am also worried It may pass onto my ureta. I am fortunate that my nurses and surgeon are excellent , open and straightforward with understanding. I spoke to the chief urology nurse today who re-iterated they will recommend bladder removal as the best way forward but will understand and support my decision. I told her I would like to go with the 3 monthly scopes and to look at alternative bcg treatment/trials. She confirmed that the cancer has to invade the muscle before It spreads elsewhere. I am not against removal per se , and will make the best informed decision for me. As my nurse says we all have diff. circumstances/value systems. Thank you once again and thoughts are with your husband. 

Pienmash 

Small world as they say...Camberwell , East Dulwich , Peckham and sometimes Brixton were my regular hang outs , along side Walworth Rd. I wish I had never left London , warts and all. I am thinking about buying a narrow boat so I can spend a few weeks in London as opposed to going for a day here and there.

Fancy having a couple of crew on your boat of dreams???

Hi Penmash

Welcome to this great forum

I chose to go the stoma route very quickly.  Unfortunately,  bladder cancer is infamous for reoccurring.  I did not want chemo treatment at all. Also whilst I was considered fit for surgery this may not be an option further down the line. 

It is such a subjective choice and I hope you will consider all options

Wishing you all the best

Love Inanna x