Non-Muscle-Invasive Bladder Cancer

Hello and welcome to the community. Sorry to hear you have had some discomfort following your TURBT. it usually takes a week or so for things to settle down. I am from the Bladder Cancer Group .The catheter used to instil the BCG is much thinner than a cystoscope and doesn't cause the same discomfort. The BCG itself has varying side effects. Rather than me going in to more detail here, Come and join us in the bladder group where many have been through this and will share experiences. Click the highlighted link to get there and post an introduction in the group with your concerns. Best wishes.

I’ve just completed 6 weeks of BCG treatment and it really wasn’t too

bad.

waiting to have a cystoscopy to see if treatment is working.

Ifnot, I will require surgery and need to be prepared, just in case. Would like to know if anyone had had a bladder constructed from a piece of small vowel and if it was successful.

I was told that there is no sensation of needing to pass urine so would be anxious about wetting myself.

Any advice would be helpful thanks.

I've replied to you on the thread you started. I have neo & have no problem sensing when I need to empty. However you do need to be prepared for incontinence to some degree during the initial training period (which can last months) and leaks can occur for various reasons. Nights are specially problematic. Can tell you more if you get to that point of neo as an option.

Thanks for that.

it’s all very helpful.

Are you still glad that you went for this option? 

Hi Kiko, obviously your medical situation could be different. But I thought you should know, the 6 BCG did not work on my husband, as in, he had already got a recurrence, a new papilloma, at the checkup cystoscopy. But he was offered 3 alternatives. More BCG, which I now understand can be compared to weedkiller on a path, you just have to redo it every so often to deal with new ones that have cropped up. Many on here have had 20+ BCGs. Or surgery, which shocked him rigid as he would not have coped well with the aftermath if there was any choice. Or similarly-to-BCG, given into the bladder, Mitomycin chemo six treatments at weekly intervals. This has been really successful for him. And this even though he could neither tolerate it warmed nor for the intended length of retention time. All that was a couple of years back and he is now down to 6 monthly checks. So it would be worth asking your team about Mitomycin even if the BCG "doesn't work" for you.

Best wushes, 

Denby

Thank you Denby.

The more information I have, the better equipped I shall  feel.

Hi, I have just finished my 2nd 3 week course of BCG which is 6 weeks after the 1st 6 seeker and albeit I felt fatigue with first bout after the first day of burning sensation not too bad. I found that advice from nurses to drink copious amounts of water based drink after the 2 hours of keeping the BCG in cut the discomfort down considerably, so good luck and hope it helps.

Hi, and in case you haven't seen this before, an ideal water based drink if you can get it is Robinson's Lemon Barley Water. This was recommended to me decades back by my old GP, as some factor in if deters bugs from the inside of your waterworks, which is ideal after they have been inspected or .prodded

Denby

Yes, I had the choice of BCG or RC, went straight to RC & plumped for neo. I'm very happy with the outcome (though I do dislike having to get up at night!) & have no regrets.