Bladder cancer

Hi Phil and welcome to this friendly and supportive group. Sorry to hear you are suffering the effects of BCG, but good to know there is no recurrence. We know the different effects and many here will be able to offer advice. It is a difficult decision to stop treatment. It would be a gamble going forward. Hopefully those in similar situations will be along to share experiences. Best wishes.

Hi Phil, Welcome to our friendly group. So sorry to hear that you are struggling with BCG  side effects. I am also on BCG, just finished my 6 week induction and had a flexible cystoscopy today which showed red patches which are going to be biopsies. Interestingly I had a conversation with the Senior Urology Nurse who performed the cystoscopy about BCG side effects and the length of treatment. She says that a large study is being concluded at the moment which seems to show that 11 or 12 doses without reoccurrence would seem to give adequate protection against reoccurrence.  As there have been Manufacturing/Supply issues historically with BCG and patient drop out rates, my Nurse thinks that the number of doses offered will reduce. She also told me to not struggle with side effects as other treatments such as chemo radiation and intravesical heated mitomycin are available and can have excellent results before we have to consider Radical cystectomy. 

Perhaps you may need an appointment to speak to your Urology Consultant to discuss other treatment plans.

I'm sure that others in the group will have more ideas for you too.

Please don't suffer in silence. Hope you get an answer from your clinicians and keep posting.

Love Ade xx

Hi Phil,

Welcome to this group but sorry to hear about your current issues with BCG.

I've always had urgency and discomfort after my BCG but this goes after 24 hours, I can only imagine how horrible this must be for it too carry on for longer.

I can't really offer any advice about stopping the BCG course, but if you are in so much discomfort then it might be best. I hear the dropping out before the full 27 instillations is fairly common, but I don't have the stats.

Wishing you all the best.

Trevor 

Hi Ade,

That's interesting to hear about the BCG research. I'll probably be finished by the time it's concluded as these things seen to take an age.

If they find that less instillations are needed then that would be great, just wish they'd hurry up lol.

Take care.

Trevor 

Hi Phil,Welcome to the group.I’m so sorry to hear you are in pain.It would be worth discussing other options with your consultant if you are suffering too badly with side effects.Best wishes Jane