Chemotherapy advice.

Have it done I've had it, it didn't work for me but I'm now having epirubicin to try and stop the tumours coming back. 

You don't really have anything to lose by trying it, mine was also G2 pTa. 

Chemo is the first port of call to try and stop it coming back, the side effects are generally nothing so don't think of it as full on chemo, chance of losing hair etc. By far the worst bit is having the catherter pipe they use to put through chemo in. 

It's a pain going every week for 6 weeks for sure especially if like me you happen to work nights. 

It's done in a few minutes literally, the first time you will have to wait a while (30 mins to hour usually) to make sure you don't have a bad reaction to it, but after that you will be in and out very quickly each visit. 

They will put a Catherter tube in and drain out any urine in your bladder then put around 50ml of mitomycin in, you hold it for an hour then pass it as normal with some bleach down the toilet and don't flush for 15 mins. You need to not share a toilet ideally as well with anyone else for the next 6 hours, and clean yourself each time you go the loo for that 6 hours. Your pee will have a purple tinge/hue the first time going to the toilet, and if your really lucky like me and have to have epirubicin then you get dark red pee as it's bright red going in and gets darker when mixed with urine. 

So yeah I'd say try it if it doesn't work they may try epirubicin or something else like in my case. Buy the side effects are so minimal it's not worth not trying it. 

Drink a decent amount for the next 24 hours after treatment but most have hardly any side effects from it, some do though. 

Most common side effects are frequent urination, urgency and sometimes some blood and maybe a bit of bladder irritation. 

Tbh I've had pretty much zero side effects other than going the loo a fair amount but I err on the side of caution and have wed and thurs off work for mine this time as I can't always be near a toilet in my job. When I had the mitomycin i did give myself 3 days off to make sure I was ok with it bit didn't need 3 days and really don't feel I need 2 days off this time if I'm honest. 

My appointments have all been the same time and day every week for consistency as well so you can plan around it as well. My last one is next Wed for this lot. 

Also ask your hospital if they have free parking for regular treatments as mine give you a slip for security to enter your vehicle registration onto the system for 3 months for free parking. 

Oh and I drive myself to each appointment too no bother with that. 

I guess what I'm saying in all that, is the benefit if it works far outweighs the risks for most people.

There will be the odd exception of course so if you happen to be in that exception minority I do apologise in advance but it seems unlikely from what I've learnt and experienced myself. 

Oh and try your hardest to relax and not tense up as it will make it easier. 

I could not tolerate the flexi camera at all and usually have a rigid cystoscope every 3 months under GA. 

But I've done the treatment now twice for 6 weeks, yes not particularly pleasant but if I can do it anyone can. 

Oh and also welcome to the forum, people on here are amazing and will help answer any questions you have and support you in any way they can. 

It's a wealth of information on here and support. 

Thank you this is just what I wanted to hear, I have agreed to go ahead but wanted to be sure it was the right choice. Thank you.

I can tolerate the flexi although it's a but painful as it goes past the muscle. The main problem I had was with the catheter. It was making my bladder spasm and felt like I was about to burst. They gave me pills to calm that down but until they realised what it was the nurses kept thinking it was blocked and trying to wash it through.

You have been so kind to share all that with me, thank you.

I totally get the whirlwind feeling too, it was all moving so fast for me too, may 24 I had blood in my urine, turbt in july and tests left right and centre like you all in a space of 6 weeks or so, but then things settled down a bit. 

I just go with the flow now as much as I can so to speak pardon the pun. 

Yep been there done that I had oxybutynin to help with the bladder spasms myself. 

Catheter now that's another story habe a read of some of my posts if you want to laugh, I did not do well with a catheter at all, and won't be having one again unless it's a must. 

I'm not saying it's all a ride in the park buy you gotta do what needs to be done. 

I will have a read, thank you for being so honest with me.

It's strange talking about this with someone who understands, I actually didn't tell anyone until the day before the operation apart from my better half of course.

I keep saying to myself I am so lucky really, although you have no dignity at all left while going through this, at least they have easy access and I don't have to be sliced open which would be way worse.
So every time I fell sorry for myself I just try to remember how much easier this is for me than what some people go through.

I told my mum I had no dignity left, and she rightly said, you should try childbirth and see how much dignity you have then.

Yep we have all been there I'm afraid, no dignity what so ever, on the plus side it makes you appreciate what women have to go through to some degree.

And yes absolutely some of us are in a much better position than others with worse BC, but we all are here now dealing with it and trying help others deal with it all.

So there is always the positives I guess in any situation no matter if it's a bad one.

Hello Anthony 

I was diagnosed Ptag2 in early 2024 had 2 turbts first one was removal followed by bladder wash dose of mitomycin which is standard in most cases then a second which was a re look and biopsy procedure after everything was checked after these procedures I was placed on a surveillance only treatment plan and have been clear for two years nearly my advice would be if they feel you need further doses of mitomycin then trust the process my experience has only been positive regarding what I have been recommended to follow by the hospital 

all the best 

Ste 

That's interesting I never got the bladder wash only removal each time. I wonder if they had done it then or been able to whether it would have been more effective. I got mixed messages whether it was more effective as a wash during turbt or as a 6 week course.

Then obviously the 6 week Mitomycin didn't stop more coming back so now I'm on Epirubicin which is commonly used for other types of cancer primarily breast cancer but is supposed to be highly effective against superficial bladder cancer so here's hoping this one works for me.