BCG long term side effects?

Hi Lee, sorry to hear you are going through this. It is quite a journey. I had a high risk T1G3 with CIS removed last year and have been on BCG since , with no recurrence of tumour in 18months .If you click on my name i have detailed the whole experience including BCG side effects. so far for me i have been lucky with few side effects, however i am not in work so don't have to worry about taking time off for treatment and tests. I know there are others on here who haven't been so lucky with the side effects, so really there is little i can advise , as its an individual thing. stay on the forum , we are all very supportive and help each other through the tough parts.

Hi Angela,

Thank you for your message. I will definitely look through your detailed experiences.

I’m glad it is all going well for you. 

Take care,

Lee 

x

Hi Lee, many of us here know how difficult it can be starting the journey from diagnosis to TURBT and BCG with cystoscope and biopsies in between. We learn so much by sharing our experiences. My journey started last November with initial diagnosis T1G3 and after the six induction BCG and a biopsy, CIS was found. I have just finished three maintenance BCG and will have another biopsy in eight weeks. BCG has a high success rate so I’m staying positive and optimistic for a good result. I was advised the effects of BCG is accumulative and I was fine for first four weeks but weeks five and six were challenging and three recent sessions have been tough but nothing that strong painkillers couldn’t deal with. In my experience the cystitis lasts about 24 hours after each session then eases off but of course it’s exhausting after sleep disturbance through the night. I’m usually recovered 48 hours after a BCG.. I don’t know anything about long term effects of BCG but I really don’t want surgery so I’m sticking with it as long as I can… I hope this is helpful 

good luck to those of us in the BCG club Frank123. I really couldnt face the surgery so sticking with BCG and hoping it continues to work for me , almost 18months now, so feeling optimistic

Thanks Frank. Appreciate it. I’m glad that you’re getting through it and it’s not too bad after the first day or two. As you said it being accumulative so it does seem that those who have had many years of it can struggle more but it may not be necessary for many. Hoping it all goes well for you going forward.  

Hi Lee,

Welcome to this group.

Had my 15th BCG instillation end of July, so over half way now. It's a long haul for sure, I'm now on 6 monthly intervals with biopsies in-between. Having the 6 Month break helps.

Usually I'm ok after 24 hours, but the urgency and constantly weeing is very tiring whilst things settle.

After installation 12 I had inflammation for a while which caused a bit of discomfort. ATM I still have urgency I usually wake once during the night needing to go. However I consider myself lucky. Some people have worse side effects for sure.

I think it's almost impossible to know what's going to happen to each person individually. Although mentioned by my consultant, bladder removal wasn't really considered and was put on the BCG course.... 

BCG is definitely not a walk in the park, but not wanting to tempt fate I'm hoping my next biopsy in October will be clear again.

Hope all goes well for you when you start your course.

Keep us posted.

Trevor 

not long to wait trevor, i hope all goes well and you get a clear one . Fingers crossed, I will be thinking of you 

Thanks Angela, hope all is well with you.

• Hello Lee83, I haven't posted here for sometime but felt I had to reply. I had 14 BCG treatments a couple of years back and it did give me grief. They stopped it because it was giving me chemical cystitis. I ended up having Ialuril instillations to help repair the bladder lining. This sounds all very negative I know but I had my cystoscopy check last Monday (23rd) and I am free of cancer (so far) and I now move to annual checkups, my CT scan was also clear. All that showed was some cystitis but the bladder walls didn't look red which they had in the past. I do have flare-ups of cystitis but it does tend to dissipate over time. I don't regret having BCG because it appears to have done it's job just in my case I perhaps paid a higher price than some of the others. It can be a very personal journey in the respect of how it affects you individually.

Thank you for sharing your personal journey. I’m happy that it has worked for you and it does seem a price worth paying, though I’m sorry you has caused you some difficulties. 

Please may I ask if there were any early signs that chemical cystitis during the treatment that may have reduced the issues you’ve had? I hope the fare ups are infrequent. 

Thanks.