Bladder preservation - anyone else considered it?

HI and welcome to the group. I chose the chemoradiation route following Gem/Cis chemo. Currently have normal bladder with all other functions working normally (touch wood) Now over 7 years down the line. 3 monthly checks for first 2 years, then on to 6 monthly. Recently changed to annual checks for up to 10 years. Annual CT scans. Happy to answer any questions if you are considering going that way. Best wishes.

A difficult decision to make. You don't say how old you are, but if you are relatively young keeping your bladder might be a more attractive option. It also depends on how much tolerance you have for the messing about with scans and so on. My bladder was removed: job done, no messing about, cancer eliminated (I hope!). The post-op experience is not pleasant, but I now get on fine with my stoma and bag ( although the changing needs some getting used to), and I live a fairly normal life and have just started running again. I am male and in my mid-70's. Your urologist should go through the pros and cons with you.

It's a very personal decision and you will have factors in your personal situation to influence you. I had a different choice, but opted for surgery for various reasons.

I have heard that having radiotherapy can make future surgery more difficult (& could preclude neobladder - this is not always an option anyway). Apart for the time in hospital & months of recovery with surgery, there will still be follow up, initially frequently but reducing to an annual visit. 

Hi Wogan

Welcome to this fab friendly forum.

I chose a stoma.  I  had RC last year. I am 69 and my Consultant told me I was in good health for an RC (I was 67 at the time). I could have gone the Chemo route but because bladder can reoccur, my health may not be good enough to have RC in the future,  I chose what was best for me. This route involves 2 scans a year and no invasive stuff. Basil, my stoma, is my best friend

Choosing what route to take is highly personal and I wish you well on your journey 

Love Inanna x

Hi Rily,

how was the follow up chemo, as bad as the Gem Cis? I ask because my experience with Gem Cis was pretty traumatic and I even ended up in Casualty in the early hours one week.

I'm (probably) choosing this route as I am a sprightly 58 year old and pretty active.

Really great that you are at year 7 and no sign of the little blighter returning! I hope my experience is as good. I'm OK with Ct scans and cystoscopy checks, they don't bother me and I think once I get past year 5 if there is no sign at that point then i'll do the same as you and have yearly checks.

It's been months since initial diagnosis and treatment started but it has gone in the blink of an eye (albeit a lot of it was pretty foggy, thanks to the Gem Cis) and the initial shock and "doom and gloom" has subsided. I need to make a final decision soon and your support is really appreciated, thank you!

hi Veteranrunner...

well, i'm not as fit as you because my knees are pretty shot! but i do still cycle and do a lot of hill walking and (I know it's bad for my knees) skiing.

At 58 i still think i am pretty young (and act half that age) so my priority is to continue being the same old me. I don't mind scans and cystoscopy procedures and to be honest I welcome them if they are going to help spot any future recurrence. 

I may need a salvage cystectomy at some point in the future if the cancer resurfaces and one of the major concerns is that it metastasises before we spot it. I'm trying to balance an awful lot of pro's and con's to each route and your help/guidance is really much appreciated!

Hi Teasswill,

That is a useful and helpful bit of information I missed, thank you.

I'd like to think a neobladder would work but my urologist/surgeon has already told me that if i have surgery they will evaluate me once they are inside and prodding about before committing to a neobladder.

there is so much to consider, isn't there!!!!

I know there could be much scar tissue from radiotherapy, and this could be painful for some months or even years before it finally settles, so i suppose it makes sense that the same scar tissue could prevent a neobladder... 

you're star for helping and I really appreciate it!

Hi Inanna,

thanks so much for your thoughts, it really is appreciated.

That is a good consideration and i'll add it to all of the other information i have. This really is a huge decision isn't it!

my journey so far has been mixed but now I am out of Gem Cis and my head is a little clearer I am able to think straight and unemotionally.

I'll have to make a decision soon though!

you and Basil keep well!

Hi . The chemo used with radiotherapy is administered differently to the Gem/Cis. I had a PICC line fitted. No problem as it is taped up most of the time and comes in handy for taking bloods, No needles. On weeks 2 and 4 of RT I had a chemo infusion pump fitted. Similar to a baby's bottle kept in a pouch. A cocktail of 5FU and MMC. Wear it 24/7. It is infused very slowly over a long period so doesn't usually have the nasty effects of the one day big hits. I didn't have any nasty effects, but obviously people react differently. The daily sessions of RT last about 15 minutes and painless but there is usually a bit of waiting. If you are interested, I did a community blog for bladder cancer awareness a couple of years ago where I detail my story. A bit boring, but if you are interested, you can see it HERE . Although the process may seem long, there are long gaps of normality between stages. 

PS. Just noticed your post re sex after treatment. It does make you infertile, but not impotent. I have everything working normally. Best wishes.

Hi Wogan

Just wondered how things are going? I am in a similar position. I am 59. 2 rounds of bcg....both times they found t1g3. Though the 2nd time it was tiny. I also have carc. in situ. Had meeting with surgeon yest. who was clear that bladder removal was best . I resisted this and I am going to have Mitomycin for 6 weeks. I really do not want bladder removal but also have bouts of anxiety about it spreading. If I still ressist having bladder removed ar ethe next steps that the NHS do 3 monthly scopes to check the state of play? thanks

Pie n mash