Discontinuing BCG because of the side effects

Hi,I’m so sorry you may have to stop treatment.I hope you get some answers to your questions.I’m no help as I only had surgery.Best wishes Jane 

Hi Trynab_stoical

really sorry to hear the bad time you are having from the bcg. Is there any treatment they can give you to ‘sooth’ the bladder if you know what i mean ? I will have a look for the studies. I had T1G3 urothelial and am about to start my induction 6 weeks again. I hope you can find a solution, it must be exhausting for you. I am sure someone on this forum who has had the same issue will be along to help and advise.

Take care 

much love Angela xx

Don't know the statistics, but I do remember reading that there is controversy about how long the BCG course needs to be. The first 6 weeks are certainly the most important. I have also heard of people with shrunken/irritated bladder as a result of BCG. From what I have heard, seems that the possible side effects of BCG are often glossed over. 

I was TaG3 & my consultant said BCG would be a reasonable option which I took that to mean good chance of cure/recurrence deferred. (I made the choice to have surgery instead for more certain likelihood of cure.) Unfortunately they still have no reliable means of knowing who will be cured with BCG & who not. Best wishes.

Thanks for your responses and good wishes.

Angela, I got some Azo pills - the ones that make your urine go orange - they're supposed to anaesthetise the urinary area in particular, but they didn't make a dent. I was in so much pain that I got out the Tramadol - took 100mg of slow release. One hour later still in agony, so took another 100mg. By now I'm floating in space so the pain was more manageable and eventually it disappeared altogether, thank god. But for a couple of hours it was pretty bad. I was yelling out loud and scaring the poor dogs. How come you're doing another induction? How far did you get with induction plus maintenance previously?

Teaswill "I have also heard of people with shrunken/irritated bladder as a result of BCG." - that's basically what I'm worried about. For the sake of a marginal benefit of continuing maintenance, risking a life changing injury to my urinary function. Interesting that you opted for surgery with Ta/G3. Warrior spirit. I've tried not to think too hard about that. Was it a good call?  

Good grief Trynab_stoical that sounds like an awful time you are going through. I really hope you can get some answers to the situation.

I have to start again because I only did one round and the following week my family got covid. It knocked us sideways for about 4 weeks , so they stopped the bcg. Its in my profile if you have a read. I am grateful they are doing something to stop a recurrence. I just hope I don't suffer the same as you have. Sending you a hug , hoping the pain eases and you get something sorted soon.

much love Angela x

Among other reasons, I wanted peace of mind & ability to get on with my life without the anxiety of repeated cystos etc. Certainly I've no regrets about my choice, although it has pros & cons. My CNS said that people come round to the decision that is right for them - we all have different values, priorities, reasoning etc.

Good point Teasswill, although I am in the “if in doubt rip it out school”.

Very interesting. I've allowed bladder cancer and its treatment to pretty much dominate my life for the past 3 years. Not every waking hour, but some of the big stuff - eg can't visit family in the UK cos urinary frequency. We only have so many years left to us

Stoical - are you being treated in France, and if so what is the care like

Hi there just to say, someone close to me stopped BCG at round 5 - severe complications with internal bleeding and still continues to day after 3 months with severe pain. If you don't feel right to continue with BCG then don't and feel the biggest mistake made on our part is not being open with the medic how much pain the BCG has caused on the fourth round. The fifth round of BCG aggravated it.