Choosing not to have bladder removed

Hi Pienmash. Bit of a different situation to mine, but could I just welcome you to the group. We know it is a difficult choice. Some people continue to have continuous treatment to try and preserve the bladder while others go straight to removal. I am sure others will be along to share experiences. Best wishes.

Hi Pienmash,Welcome from me too.My bladder was severely diseased from Interstitial cystitis for over 30 years.I developed muscle invasive bladder cancer and had to have my bladder removed.Radical cystectomy is major surgery and recovery can take months.I’m glad to be rid of my bladder but in your situation I would probably want to hang on to it.Hopefully your surgeon will be able to discuss all the pro’s and con’s with you on Friday.If you did have bladder removal follow up would be with scans and you would have the responsibilty of caring for a stoma or neo bladder.I have a stoma and have adjusted well to it.Best wishes.Jane 

Tank you Rily-appreciated.

Thank you! haha ..typo

Thank you Jane. Appreciated. I am 'only' 59 and relatively  fit and would like to hang onto my bladder for a few more years If poss. Take care.

My take Pienmash, is, you hang right on to your bladder. I have been heard to say before, surgeons like doing surgery so they would say have surgery wouldn't they. Sorry no offence is meant to anyone not sharing this view, and I acknowledge totally that it's wonderful they can do the surgery for those for whom it is a must to stay alive. Right, got that out of the way.

My husband had G3 Pta so very little less than yours and CIS was mentioned. He had a complete bladder-full of tumours by the time he got seen, too many to even count. That was 4 years ago. After a TURBT, 6 BCG, a check that turned into a TURBT as there was one new tumour, and a switch to Mitomycin, he has been clear apart from 'the dreaded' red patches, since.

Hope this encourages you!

Denby

Thanks Denby. Appreciated. Did your husband have the Mitomycin after 2 rounds of BCG and was It on the NHS?

It is favourably mentioned a few times on an american site I look at. Great news he has gone 4 years . Does he go in 

every 3 months for a check and tumour removal If needed , again Is this on the NHS? CIS has also been mentioned for me.

Thanks in advance!

Pienmash

When you have G3, it's a gamble - no-one can say if you will be the lucky percentage that don't progress to muscle invasive, or the unlucky percentage that do. Muscle invasive means more aggressive treatment at the least & can mean incurable. Some win, some lose - those that lose big time are not here to tell their story. So you tend to get a biased view of success & survival vs not.

I quite appreciate that it is a personal choice & people have all sorts of reasons behind their decision making. I was age 57 and chose surgery - with clear post op path report, I am deemed most likely cured. I have peace of mind & never regretted my choice.

Very best wishes for your continuing good health.

Thanks Teasswill.

Yes It Is a gamble and I am hoping but not confident that the surgeon will be willing to put % chances on x happening , but imagine that will too general to have any real meaning. And yes I do have significant reasons why I wish to keep my bladder for as long as poss. Once again-thanks 

Hi Pienmash [as an East-Ender's grand-daughter I do love your moniker!] - yes all my husband's treatment has been NHS.

After the early recurrence the consultant offered him " 3 equal choices" ie more BCG, Mitomycin or bladder removal. To say we were poleaxed by the latter puts it mildly. By his own acknowledgement my husband would not manage well with the maintenance of a stoma and bags although others do fine. And both of us wanted to go on being able to enjoy our love life, him being now late 70's notwithstanding. Which we have done for the last 4 years and hope to go on doing indefinitely! At that time we had not known that many people have dozens of BCG, we just though it had 'failed' due to the single recurrence, so he asked for 'try Mitomycin.'

Yes he has check-ups 3 or 6 monthly and is currently waiting another biopsy [so GA] after last week's flexi showed the red patches seen the previous time were still evident. 

Do ask any further questions, it seems odd how some doctors apparently don't say much if anything about Mitomycin but I suppose their training or experience may vary. Teaaswill's comments are fair enough but each must judge their preference including quality of life and if I was male and certainly at your age I wouldn't want the usual loss of function that goes with RC; though ' nerve sparing' may be attempted where surgically possible, it is never guaranteed from what I've read here.

Regards, 

Denby