Hi All

My sister had the same diagnosis as you and she is now 8 yrs down the road and doing well. She had two recurs the first year but clean ever since.

I have confidence that you will fall on the good side of the stats and stay well. The last I read the risk of recurrence was 38%, the risk of progression around 3% and the risk of death from is about 1%. Those are very good odds in cancer-land, where all things are relative.

Your life will never be quite the same, no matter how good the prognosis. Life long follow up is still necessary, but there is discussion of extending the follow up to 5 yrs after a person goes a year with no recurrence (only for Ta, G1 blc). My sister complains of side effects from years of cystos, mainly stress incontinence. But her doctor from MSK/Sloan in NYC is not saying she can extend the follow up times. We’ll see how that one pans out.

All the best, and thank you for your contribution. Most folks with such good prognoses don’t hang around places like this!

Dear Wendy,

Thank you for your reply.

I’m very pleased to hear about your sister. Examples such as her’s are certainly good to hear. I was told by one of the hospital nurses that that she had cared for patients who had been under observation for 20-30 years. They’d had recurrences which had necessitated further treatment, and then a return to more frequent cystoscopies, but they were still alive and kicking.

I’m prepared as much as I can be for the regular cystoscopies (and for a recurrence). I see it as a necessary evil. It’s a small price to pay to remain healthy. To be honest, I was expecting more discomfort than there was. It stung for a few hours afterwards, but as I say, I understand why it has to be done. Hopefully the day isn’t to far away when my check-up consists of piddling into a bottle.

I’ll certainly do my best to update my posts.

All the best.


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