Confused about the timing of my BCG maintenance doses

Hi trynab_stoical . Not experienced BCG myself, but reading many posts on here there does seem to be a lot of inconsistencies with different hospitals. I hope you get some answers. Best wishes.

Hi trynab_stoicsl,

I can only comment on my treatment plan. I have been scheduled on the 3 year plan and I've just started on my 2nd maintenance BCG sessions.

I understand that I will have 27 session's in total the 1st 21 will have a three Month break in-between and the final two sets of 3 having 6 Month breaks.

My consultant is very insistent with the timings and keeping to them as close as possible. Hence the reason my current treatment is being done during the festive season and new year.

He gave me a copy of a schedule he uses and I thought this was standard, but reading other people's experiences I now understand this isn't always the case.

Saying all that I'm sorry to hear you're having side effects with the BCG.

I also hope you get the answers back soonest.

Kindest Regards 

My husband had 6 BCG’s then 2x 3 maintenance BCG’s and is now having 3 monthly flexible cystoscopy’s, that’s at the N&N hospital at Norwich, definitely different from other posts on here, Jean x

Hmmm…. the SWOG protocol is also 27 doses over three years.

So, after induction you have four 3-month gaps to get you to the 18-session mark and then three 6-month gaps (the duration of the maintenance sessions makes it more complicated because each one is three weeks long), and that takes you to 27 sessions over three years. I think I get it. But my brain hurts a little. Might have wiped out too many brain cells over the years.

I've never heard of the SWOG protocol until I read your post but it must be the same.

Sounds like you've looked into it more than me, so you're maths is probably better than mine. I'll have to have another look at my schedule to jog my memory.

Apologies I've just been looking at my schedule again. I've got confused with the dates as I'll be having cystcopys every 3 Months. My schedule states 3 Months from last cystoscopy and I'm having a cystcopys mid treatments.

All very confusing.

So after the induction, I'll have two sets of maintenance with s 3 month break and then 5 at 6 Months intervals.

Sorry again if this caused any confusion.

Kindest Regards 

Don't apologise, it is genuinely complicated imo. What you described there "after the induction, I'll have two sets of maintenance with s 3 month break and then 5 at 6 Months intervals" sounds like 'classic SWOG'. To my mind, that adds up to 24 treatments in total, rather than the 27 treatments that you and I are on. I'm probably obsessing about the schedule because I'm disappointed that my next BCG is coming so soon (Jan). I had a cystoscopy on Monday that was relatively traumatic - painful and caused blood in urine - and I feel I need more time to recover before they start shoving tubes into me again   

Sorry to hear you had problems with your cystoscopy.

My trouble is I didn't really take a lot in at the beginning, my meetings with the consultant were just a blur. I just do what I'm told etc. I'm a bit better now a year on, but obviously my understanding still wasn't up to speed.

I often read terminology on the forums and think I should really know what that means by now.

I'm glad your post made me revisit my notes and I know understand my schedule a lot more.

I get knocked out during my cystoscopy procedures (so far) as they take samples for biopsies, but it does take a while to feel better.

My last cystoscopy was on 10.11 and my BCG started 22.12 so had a longer break in-between and it did make a difference I believe. Less urgency to go and recovered better. 

Although my notes did show BCG should start 3 weeks after cystoscopy, but I guess it takes two weeks to get the results, then another meeting with the consultant and then to get booked in for the BCG.

You can never get used to the amount of tubes and things they insert. I don't find the BCG catheter to bad in general, but can really appreciate your concern if you had a traumatic cystcopy.

I wish you all the best and hopefully you will be fully recovered by the time the BCG starts.

Take care 

I know what you mean. When we get the diagnosis, we are so stunned by the bad news, it is, as you say, like a blur. I’d probably have just carried on doing what I was told indefinitely, just grateful that all these incredibly clever people were trying to help me. But the side effects made me wake up and realise I need to pay attention to what’s happening.
When I arrived for my recent ‘soft’ cystoscopy, there was a trainee in the treatment room. My heart always sinks when I see a fresh-faced young person beaming at me when I walk in. I dread it’ll be them doing the insertion. On this occasion it wasn’t but I think the urologist was giving them a bit of a tour around the human bladder. It seemed to go on much too long.
As you say, you never get used to all the tubes. I thank God that the BCG appears to be working. The prospect of self-catheterisation, eg to facilitate a ‘neo bladder’, seems unimaginably horrible.

On that note, Merry Christmas to you! and all of you out there going through similar stuff. You are not alone x