BCG complications leaflet - just wondering?

Hello Denby, no absolutely not. I took it onboard because the thought of losing my bladder wasn't an option I really wanted to consider at the time. I had no explanation of what was to come bar the booklet they give you. I have read on other forums whereby recipients of BCG suffer from joint pain but aren't sure if it is BCG related.

I recently saw my GP and had to explain the process I've been through and how it's caused me so much grief with cystitis and the discomfort that comes with it but she looked a tad blankly at me and just prescribed some strong co-codamols. But I feel the same way about the urology clinic, there appears to be no follow up with patients who suffer after effects of BCG. It's me that has had to push for Ialuril instillations that have to get rubber stamped by the consultant. I hope you get a good response from your question because I do think BCG treatments have wider implications than we are perhaps led to believe.

Thanks, Chris 

When given the choice of BCG or RC, I was given the hosp leaflet about BCG which mentioned some side effects, but not all that are possible, nor how severe. Research on the internet gave me more info which assisted in weighing up the two options.

1. I was diagnosed with cis bladder cancer Dec 2020 ..I was just told bcg is the recommended treatment and if not successful other things would be looked at .. I had 15 treatments and thankfully all good ..I have a flexi on April 11th so hope it keeps up .. I wasn't told much about future side effects from.the bcg only what to expect after the immediate treatment.. I suppose I was just relieved to have some treatment to help me as I really didn't understand much about  bladder cancer at all and find many people I speak to are the same x best of luck on your journey my friends x

Hi Denby

I certainly didn't receive this amount of information when they recommended BCG but frankly, it would have made no difference to my decision. The way I saw it was I either started a course of BCG or I had my bladder removed. For me, this was a no-brainer and had I seen this research previously I would have still gone ahead with BCG.

The point you make regarding GPs is a very valid one and you would hope, despite Jacaranda07's experience, that one's GP may do a little research into the effects of BCG when consulting with a patient who has had this treatment.

Luckily, so far, the only side effects I've had from BCG is discomfort for a few hours after each treatment due to the invasive nature of the catheter.

I've had six doses and I'm now awaiting a TURBT to see what happens next.

Best Wishes

HH

Yes, knowing the possibilities would not have changed my OH's decision one bit either, as he desperately wanted to avoid RC if possible.

It's just that I would have pushed harder sooner faced with a GP who thought he 'just had dry skin' [ I kid you not!!!] THREE visits running, when it was the beginning of what was later treated as Cellulitis, but turned out to actually be the beginning of infection in the artificial knee joint. Leading to the sepsis.

Anyway he is still walking albeit not far and still has the bladder to his relief. Now to tackle getting in touch with the consultant to plead for Ialuril as the GP won't deal with the request.

Thanks to all for your replies. All one way more or less so far...

Interesting reading Denby

I think I looked up as much as I could about bcg last year but like others would take the chance as RC was my chosen way to continue. Fingers crossed seem OK but only had 6 and more coming up. 

Hello Denby, I have just returned from my 2nd monthly Ialuril top up. I had a good chat with my CNS. She off her own back said she'd up my Ialuril instillations to twice a month. Also she requested an appointment with the urologist so I can explain my plight. I came away a little more satisfied knowing that at least I have been listened to this time. She also reiterated that in her opinion the problem is purely down to cystitis and again said it will clear eventually on its own, I do hope she's right.

Chris.