Treatment options

Hi jenlids and welcome to the forum.

My take is not that of having had bladder removal, but of my husband being offered it and not being terrified [ops don't scare him], but severely horrified at the offer of bladder removal. As was I. He was G3 pTa about 5 years ago, had had TURBT and 6 BCG and a small but very swift recurrence. Given the choice of chemo:- Mitomycin into the bladder very like the BCG,  bladder removal, [or in his case more BCG] he took the Mitomycin. He has been fine since apart from the odd red patch, but this was not cancerous. So why not try the chemo and see how you go? It is true there is a slight risk that you could get a recurrence so aggressive it would be too late to then go for the bladder removal but I have not heard of it happening.  Even despite covid my husband has had all his regular checks, the spacing of 3 or 6 months is designed to catch anything in plenty of time for treatment.

The other question could be age/fitness, if you are fit enough now but might not be in the future. However only today on here a lady was writing about her husband who had his RC at 79 and is now a fit 82. 

No doubt the happy owners of stomas and neobladders will be along soon to reassure you that if it is your choice you will eventually be fine.

Best wishes, Denby

Do you know why they say no more BCG? Is that because you have already had a recurrence?

It is a gamble & contrary to Denby, I do know of people who have had a recurrence that was incurable. There is no guarantee that regular checks will catch a recurrence before it reaches that point. Even a recurrence that is muscle invasive reduces the chances of cure & entails full body chemo plus surgery or radiotherapy. 

Surgery is certainly not without risk & obviously there are side effects & a new urinary diversion to manage, but probably not as bad as you fear. It is a very difficult choice, you need to weigh up pros & cons & your priorities, personal/family situation, what risk you are willing to take. I had surgery 10 years ago & happy to answer any questions about that. Best wishes.

Thanks for replying Denby. I am not afraid of operations but possibly recovery afterwards. When I had my Hysterectomy it took me so long and I was so ill.  I have also had a knee replacement, so used to pain  I am almost 76  now and we all know the older you get the more complications can occur. I just cringe at the thought of it. Will have to wait and see what they say when they contact me again.

Hi Teasswill. Yes they say I can't have any more BCG because it has recurred. 

That is my fear, that, as it's such an aggressive one, it may get a lot worse, then be too late to operate.

Lots of thinking to do and will wait till they contact me again after Easter. I will probably need your help again then

Hi jenlids, I forgot to mention my OH was about 72 when all this was discovered, though we are certain he had had it for years before, and is now 77. [Hosp where we lived before did what we now recognise was a hefty TURBT without ever mentioning cancer, they just said "seaweed like growths but there had been more than they had anticipated," and did no follow up!!!]. His letters all say 'aggressive' by the way. I have seen on here over the years since 2017 that many many people go on with more BCG after recurrences which is obviously why the Hosp offered him 'more BCG as one of 3 equal options' but we did not know that back then, so chose the Mitomycin since the recurrence after first six BCG made us feel BCG had 'failed'.

best wishes whichever way you go,

Denby

Hi Jenlids,I had a cystectomy with Ileal conduit in 2019 and am happy to answer questions.I don’t know whether the recovery time might be shorter as you have had a hysterectomy.I had muscle invasive cancer but am living happily with a stoma.Best wishes Jane

Thank for that Jane. What is an lleal conduit? So pleased you are coping so well. I have read that they might possibly have to take ovaries and womb out as well so as I have none that is a bonus. How long were you in hospital for?  Best wishes to yourself too. Jenny

Bllimey that was not good treatment. I was told immediately after cystoscopy that it was probably cancerous and Iwas very well treated considering it was in lockdown.  Jenny

Hi Jenny

I am another person living happily without my bladder, and a stoma in its place. Well, actually 2 stomas. I had a massive surgery which involved losing my womb and ovaries along with multiple other bits of me all at the same time but my life is very good now, more than 2 years on. I was only in hospital for 2 weeks after my surgery, and never been back in for anything. Good luck with your decision making. 

Sarah xx

Oh my goodness Sarah. Must have been horrible for you. So pleased you are getting on so well. I had my womb and ovaries removed in 1992, my gallbladder in 2009 and had a new knee  3 years ago. Won't be much left of me at this rate lol  I am so grateful for all this information. Jenny