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. 

Hi Iankb, It was reassuring reading your post. Like yourself, I have completed 12 doses. The last cystoscopy showed up clear. Much like all of you on this chat, I have been suffering from intense pain and frequency. It's been 6 weeks since my last lot of BCG and at times the pain feels worse and more frequent. I have been searching the internet to try and find answers but to no avail. I stumbled across this forum to my delight to read that I'm not the only one and that it seems to be more common than not to experience the pain and discomfort that we are experiencing. I have spoken to my urologist and he doesn't have any decisive answers except that the BCG inflames the inner bladder lining. My urologist is encouraging me to continue the treatment due to my young age and aggressiveness of the cancer although it was non-invasive. I just wish there was some medication that can relieve some of the intense pain! I have changed my diet after doing extensive research on diet and disease and now eat loads of fresh fruit and vegetables. Healthwise I feel better for it but frustrated that I'm unable to exercise as this just aggravates the pain. I also drink loads of water and have stopped drinking caffeine drinks. I feel that if there is anything I can do to reduce the chances of the cancer returning then I will give it a go. 

Hello Capey,

Good to hear from you & that you also confirm that some of us seem to suffer unduly from these side effects of BCG.

I note your Urologist has no answers to the problems - this seems to be the same comments from consultants in general. It's just a pity the possible effects were not more clearly explained at the start - I was told it would likely be very uncomfortable for a few days, including blood in urine, but it was not mentioned that it could go on for weeks and weeks! I beleive many patients are lucky enough not to suffer longer term effects but a significant number also get our problems.

I have researched masses of info on the internet & it seems that in the USA there is a study / research being carried out into these longer term effects but that could take a year or two before any results or treatments are found.

Also, because the effects of BCG are accumulative it can exacerbate the situation each time you get a further dose. No doubt that is partly why the gaps between treatments are now 6 months - I have no more due until December & hope that this settles down soon.

I went to see my GP who felt it may be exacerbared due to a UTI ( urinary tract infection) & suggested I try some anti biotics. They seemed to reduce the blood in urine & decrease the prickly / burning when peeing, but when the course ended it has all returned as it was before. My GP said there may be another type of antibiotic that could be tried after the initial prescription ( Amoxycillin), but to try these first. I see GP again in a week.

I am also going to e-mail my Urology team / keyworker & expalin the side effects that have been with me since last BCG dose on 17 June. Don't suppose that will result in anything much but it will keep them informed of what is happening & they may find it useful overall to know some people have a rougher time than others!

I will also be able to explain face to face at end of July when I am due a flexible cystocopy to check bladder & will push the consultant a bit to see if he knows of anything that may possibly alleviate the symptoms.

On the previous treatment my symptoms pretty much wore off  after 3 weeks, but not this time, sadly..

I note also you say you feel a lot worse after anything strenuous & it is the same with me. Trouble is that it stops you doing almost anything & is frustrtaing to say the least.

( Have you tried taking double doses of strong gin & tonic - it cures nothing but you don't care coz you are in La La land)!!!!!!!!!!

Best wishes & good luck

Iain

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

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