Hello.

Just briefly, i was diagnosed with stage G3 bladder cancer back in October of 2015.

i started my corse of BCG treatment in January 2016 and had 2 years of it (around 22 doses) i did loose count.

like you, i was fine and i must admit, "cocky" for the first 3-doses but after that i was bad, fealing sick, stinging pain down the eurethra and lots of toilet urgency and loads of other side affects you may already know about.

back to the present, i am very thankfull to all concerned, the consultants and the nurses administering the treatment that i am still cancer free but i am now left with an intermitant stinging sensation down the euethra that some times stops me in my tracks and leaves me doubled up in agony especial when i urgently need a pee.

i asked the consultnats about this condition and was told that it was a "trade off" from all the treatment and that "at least you still cancer free".

where as i'm greatful to be cancer free still, the condition i'm left with i'm unable to get answers to, one of the nurses said it was down to the strength of the urine and to "make water your friend" but this is also difficult when your left with reduced bladder capacity due to the treatment.

I CAN'T GET ANSWERS, we shouldnt be left in this condition.

if i had known all this before treatment, i would of had them take the bladder away.

Sorry if this doesnt give you the answer you were looking for.

Hiya trev and pony.

You guys have done well to get as far along as you have, I gave up after 17 as the treatments side effects were so severe.

I had very similar side effects,  mine subsided to an acceptably uncomfortable level after about 3 months,  and continue to subside long term, this will be at the end of my treatments now, so I will get to find out the longer term effects,  past the  6 months. 

Update, I have this week had treatment 11 and my trips to toilet are constant both night and day. This morning (two days after treatment) i have spent the whole morning going to the toilet every ten minutes or so, it was so bad that my pee was coming without warning at times. I am glad the cancer has gone but this treatment is something else. It took me several weeks to get over the regid camera which included a trip to my local A&E due to a blockage. I have one more treatment next week which I am not looking forward to and then a 6month break I hope.  

My life has continued with 24/7 trips to the toilet I am unable to venture far from home and have not been in my car for sometime, so no life. Going to the toilet is painful sudden and then very urgent, sometimes I have to almost run home from town and of course very little sleep as I am up every hour. I am 75 years old, fit and the few years I have left don't want to spend them living as I am, so I am having my bladder out this coming Friday 3rd January, not what I wanted, it's a big operation but I don't want another year like 2019, I need to be able to get out and enjoy life without the constant looking for the next toilet. I had to pass a stress test to make sure I was fit enough , for my trips to the hospita I have had to go by train as they have toilets aboard, on a 40 minute trip I needed to go three times . Just as I get ready to go someone gets in first then I am in trouble as I found out on my last trip, nearly wet myself.

Hi Jorg75, so very interested to read your post , & hope your surgery goes well, do let us know. I had my 12th bcg treatment 8weeks ago & have had 2 ialuril treatments to "reline "my poor bladder, but am in such pain often, having to wee umpteen times 24/7, culminating yesterday in calling 999, as I was in indescribable pain, having already had a trip to A&E   3weeks ago with same, only after i.v. morphine did the pain subside.

I'm due at hospital tomorrow for 3rd(of 8) ialuril installations, but want to beg for removal of bladder, for, like you I have no quality of life now. Fingers crossed !!

I will report back and let you know how I got on, the operation is not what I wanted but I have no life now just stuck at home most of the time. I might no be here for many more years so would like to be able to get out and enjoy the Yorkshire countryside.

Hi again jorg -I too am in 70's, almost housebound (only since my last round of bcg treatments !) & longing to get back to my long walks in the clevland hills. Best of luck !!

Hi you could try one of these I have one and I can go out and about anywhere now

www.ebay.co.uk/.../123881536625

Hi you could try one of these it helped me a lot

www.ebay.co.uk/.../123881536625

Hi & thankyou for reply. sadly not only do I have to "go" umpteen times both day & night but have horrible pain both when I wee & inbetween so much that I ended up in A & E one time &  it took a shot of i.v. morphine to stop it. I'm at hospital today for another dose of ialuril, but am so sore "inside", not sure if I can tolerate it. We'll see

hya guys just finished my 12th bcg treatment got another 6to side effects are getting worse and longer lasting each time the pain passing water being the worst my specialist nurse as told me it does get worse the more you have so i guess its grit my teeth time the bright side to this if there is one is ive had bladder cancer about 22yrs so as my consultant says you arent doing to bad with it i,m 72 now 

Hi, could you tell me how many times your bladder cancer came back over the 22 year period, and how long was the periods that you was clear before it returned, and was you treated with bcg each time.

Thank you

Hi, could you tell me how many times your bladder cancer came back over the 22 year period, and how long was the periods that you was clear before it returned, and was you treated with bcg each time.

Thank you

hi pomy only had 4 cycles of bcg 3 lots per cycle started 2yrs ago on it was on something else before that cant remember name of it sorry over the 22yrs i,d say it returned about 4 times in the early days they have kept it at bay now for about 12yrs or more if i recall name of other treatment i.ll get back to you but  it was similer liquid into bladder

hi again pomy the other treatment i had was mitomycin used just like bcg 

Hi badger 

Thanks for your reply, I had mitomycin never worked for me either, then I had 15 bcgs and was clear for 4 years then it came back, just had another 12 bcgs and all clear again, did they treat you with bcg before you were clear for 12 years