What happens after 3 years of (hopefully) successful BCG treatments?

Posted by joesmom03 @joesmom03, Aug 3 7:11am

I was diagnosed with high grade NMIBC in Jan 2023. I’m being treated at a NCI University based hospital. I’ve had regular cystoscopies that have been NED.

I have a cystoscopy later today and will ask this question but I’m curious what others have done at this point. My oncologist told me that we get 3 years of treatment but we haven’t discussed what happens next.

Do people just stop treatments altogether and continue with surveillance? If I get a choice, what have others done? I have pretty common side effects, a painful 24 hours after treatment and now kind of constant fatigue.

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quahog | @quahog | Aug 6 10:53am

In reply to @joesmom03 "Hi. My cystoscopy on Monday was NED. Still waiting for cytology results. My oncologist said that..." + (show)

@joesmom03
I think we all feel that way in one degree or another. There is a high rate of reoccurrence and that’s always in the back of your mind. My 6 month cystoscopy is in September and I’m apprehensive since I had to stop BCG after 18 months because of side effects. I think it’s best to adopt a stoic philosophy and live as normally as you can.

joesmom03 | @joesmom03 | Aug 5 1:58pm

Hi. My cystoscopy on Monday was NED. Still waiting for cytology results.

My oncologist said that her protocol is 3 years of BCG and that’s it. No other treatment is necessary. I’ll continue with 6 month cystoscopies into year 4, then yearly. I also get yearly lung and pelvic CTs.

I left my appointment elated because she said doing a full three years of BCG is rare. I should be pleased and I am, but with high grade disease I’ve always felt like a ticking time bomb and now I feel a layer of protection is gone now without treatment.

I know, it’s the nature of the beast, maybe without the BCG treatments I won’t have the regular reminders that I have cancer.

Thanks and all my best to us all.