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 & good luck, I had 15 sessions of BCG & while it was unbearable at times it's best to let the experts get on with the treatment.

IvI' just had my 2nd flexible cystoscopy & it's shown as bladder normal which is fantastic. I'm still classed high risk bladder cancer but I feel great.

Mine is also classed as high risk I had 15 bcgs and was clear for 4 years then it came back, then had two operations to cut it out and another 12 bcgs, hope yours dosnt come back because the agony for me is tenfold the second time around 

Yeh that's the part I'm dreading if it comes back.

I'm 1 yr clear now so I'll just face up to it if it should happen.

Thanks

I would be interested to know about long term effects with those more experienced. After 12 treatments and all clear I am booked for no. 13 in September. At present I have permanent pain, manageable during the day but difficult at night without pain killers, and rarely sleep more than a few hours before waking, without drug assistance, and then it is on/off for the rest of the night. I have been prescibed Oxybutinyn hydrochoride which for me helps with urgency etc. but apparently has little eefect on pain levels at night. It also gives me a permanetly dry mouth. Not pleasant.

Notice in todays news the use of a variant of the common cold virous instead of BCG for what appears to be the same treatment technique.

Hello dickie,

I read your post with some interest as experiencing similar effects, albeit with some slight differences.

I also have recently completed my 12th does of BCG & am due a flexible cystoscopy at end July to see how things look.

Ever since the last dose of 3 installations I have had almost constant pain throughout & particularly on passing water - I am told it is due to BCG related cystitis - and it really is very uncomfortable, in particulat through the day - stinging / burning sensation. It can be almost impossible to find a comfortable way to sit & not able to go out & around town etc. as too uncomfortable & always worried may not be able to get to a loo quickly enough.

I find lying in bed can sometime relive the symptoms & take frequent doses of Paracetamol with limited effect. It is rare that I can sttay asleep for more than about 1 1/2 to 2 hours without needing to get up for the loo. Cnnot take much in way of a different pain killer becausd am also on heart medication which clashes with many other drugs - bit of a beggar really!

From research & speaking to urology team I hear that some people can take the whole 3 year course of BCG with little by way of side effects but some of us are cursed with this cystitis proble - or in some cases it is because the treatment causes an infection requiring antibiotics.I gather this can be checked by having urine samples checked so might be worth asking your urology teasm or GP. Unfortunate not all GP's have too much experience of patients suffering these side effects & they refer you back to your urology team. If you have a Keyworker - which ought to be the case - ask to speak to them & give full details of problems.

I also read abot the new treatment you refer too, but it may be a bit of a wait for that as not yet generally cleared for automatice use or if suitable if you have been receiving BCG.

However, on a more positive note I undertand that BCG does work in the majority of cases for non invasive tumours & although it is acknowledged that for some people the side effects can be a bit fierce it usually works & clears up the cancer. 

I should likely be thankful that it is non invasive tumour as the other diagnosis would not be so good!

Mine is, as mentioned, non invsaive but the tumour removed was a grade 3 so therefore more aggresive so will try to see the treatment through to the end. Next BCG dose of 3 for me is due in December, so have a few months break, thank heavens!

Hang in there & best wishes.

Hi.

As I previously said I had 15 sessions of BCG then I got clearance in October/November 2018. I've had another Flexi cystoscopy in June 2019 which also showed clear but this week I've started having strange bladder pains & after a full night's sleep I feel my bladder is totally empty , I am going to monitor this & report to my urologist. Anybody else have had the same.?

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.

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 & 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