Is BCG treatment that important?

Weegel 6 months ago

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Hi all, I was diagnosed last July with bladder cancer, I’ve had two TURBT’s as it was a large tumour, a nephrostomy for 4 months & then replaced with a stent)

I’ve had my first 6 week session of BCG treatment, the last session being in January. The second round of treatment should have started mid April but I heard nothing from the hospital so I called to query this and my appointment duly arrived but the first session isn’t until 27th June, this will be 5 & a half months after the first one, does this matter? (ie: will it have negative impact if treatment isn’t kept to 3 monthly?).

I had a cystoscopy and stent removal this week and it’s all looking good (thank goodness) but I’m truly fed up with the whole thing and just want to put it to bed and get on with my life now.

BFG 6 months ago

Hi Weegel,

Good question and my BCG instillations haven't been exactly 3 month's in-between. I've had biopsies and waiting for the results etc seems to push this back. However I know my consultant likes to keep everything as tight to the schedule as possible.

I'm now on 6 monthly intervals, and my last BCG was ok on 3rd Jan so should have started on 3rd June, but only had my biopsy on 14th June, with my next consultation booked for 28th June. I expect my BCG to start soon after.

Saying all that I haven't had to wait as long as you have and it's a shame you had to chase them up.

Personally I want to do the full 27 instillations just so I know I've done all I can, but I've definitely had those thoughts about is this worth it, does it make a difference etc.

Sorry I couldn't really offer any great insight into your actual question, but I think it's quite common for things to be postponed, albeit probably not as long as you've had to.

Take care.

Trevor

Weegel 6 months ago

Hi Trevor (BFG)

Thank you for your reply, I’m just very disillusioned with how my experience has been over the past year.

Sending you all the best for your future treatments and recovery

Leo1 6 months ago

BCG can be pretty effective, but the clinicians have to stay on top of the surveillance and try and adhere where possible to the SWOG protocol. For clinical reasons it mat not always be possible to follow SWOG. Infections, biopsies, histology etc can get in the way, its very important to stay in constant touch with your specialist nurse or consultants Secretary , best Leo

Weegel 6 months ago in reply to Leo1

Hi Leo, I do understand that delays can happen but I’m fairly certain that I was just forgotten. I did call the unit asking for a call back regarding the delay but no call back was forthcoming. There have been quite a few problems over the last year and am losing confidence with them.
Thank you for the info on SWOG protocol, I’d never heard of it.

Leo1 6 months ago in reply to Weegel

Weegel, you must be very persistent and frequent in your communications - of course they should be proactive, but you must stay on top of them also. Should not have to , but…that is the way it is. Leo

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