Question?

Hi Pegasus

I haven’t had BCG myself; I opted for the nuclear Radical Cystectomy operation! I’m fortunate to attend a face to face bladder cancer support group, attended by one of the Trust’s Urology Consultants. This question has come up; apparently the latest thinking is for 18 BCG installations rather than 27 - the benefit from the final 9 is apparently minimal, especially given the more severe side effects, with later BCG installations.

The consultant does encourage trying to get up to 18 installations, although he does appreciate that this can be difficult with cumulative side effects.

Best wishes 

Gareth

Hi Pegasus,

Sorry to hear you're having issues with your BCG. 

Are you scheduled to have the 27 instillations? I'm on number.15 and although I have some affects from the course, they aren't as bad as yours by the sound of it.

I'm also on six monthly intervals between each batch now so that helps. Are you still on three monthly sessions, do you think having a longer break will help?

With regards to stopping the treatment, I can't really comment on. I understand that quite a high percentage do drop out for various reasons. 

Although I can't wait to be done with the BCG for sure and have sometimes had the same thoughts about stopping early.

Hope you get some better advice than what I can give, but wish you all the best.

Trevor 

Hi Gareth,

That's really interesting to hear, do you think this will become general practice? I'll do the 27 if I can, but would prefer to only do 18...

Also wondering who makes these decisions in general and how long before things change if things do change. Sorry not really asking you, just thinking out loud as I know you won't have the answers lol.. living in hope a bit.

Thanks.

Trevor 

Hi Trevor

I’m not a Urologist, but from what we’ve been told by the consultant the 18 treatment installation is standard practice in Calderdale & Kirklees (27 if there are any issues, 18 if cystoscopies are all clear). Different health trusts still keep with the 27; whether the 18 will become universal I don’t know?

Best wishes 

Gareth

Hi Pegasus, I absolutely hate BCG and I hate fatigue ( I have long covid so also get Post Exertional Malaise , fancy name for fatigue after i have done anything over reaching. so I understand how you are totally fed up with it. my advice is to have a frank conversation with your consultant. Ask him the pros and cons and arm yourself with all the info before you make a decision.

I had a high grade T1G3 with CIS , so for me I will take as many as they say if it means being cancer free and keeping my bladder. 

Cheers Gareth,

Being optimistic a bit if I'm honest, but is interesting to hear about how other Trust's work.

I've been wanting to move which would mean moving hospital's so have put everything on hold. Plus I really like my consultant and oncology nurses.

My 18th would finish early February 2025 and having 27 would mean waiting until July/August 2026. 

I know moving is not as important as getting treatment and I'll do what is needed.

It's encouraging to hear that 18 might be the new standard, but can guarantee this will change the day after my 27th BCG lol.

Thanks again.

Trevor 

I just want to say a huge thank you to all the replies. It had really given me food for thought. 

What a wonderful thing to have you all here it really is amazing what McMillan do.

i really do wish you all health as this is all that matters in the end.

This cancer rocked my world to begin with, now is feels like an annoyance which is holding me back. Fingers crossed for the clear scan and then a chat about next steps. 
I am on 6 Monthly BCG now but 27 will take me well over three years of treatment. 
I really appreciate all your comments. Thank you for your time.

Hi Pegasus,

Best of luck  for your cystcopy on Friday. 

It's a long haul game this BCG course for sure. Seems like a lifetime ago when I had my first one.

I do wonder sometimes how they discovered that shoving tuberculous vaccine into your bladder helps... Wonder what other things have been inserted through people's bits and into the bladder over time in the name of medical science lol.

Plus you sometimes hear of other developments, BCG coil, bladder cancer vaccines etc, but I guess these take a while before being used.

Trevor 

When I was going through tests and treatment 13 years ago, I do recall reading that the initial 6 instillations are the most important, that there is controversy about the efficacy of the maintenance doses. I don't know if there are any newer studies looking at this. Probably sensible to discuss with your consultant, but quality of life is an important consideration. Be sure to keep up with regular checks anyway. Best wishes.

Celebrating as scan all clear, this makes men want to stop BCG more. 

I feel like I was told the best option was bladder removal and now it has gone with the BCG. I feel like I have lost my trust in doctors as they work on risk and the worst possible outcome. 

No-one ever tells you the bright side. today is the bright side and I am taking my daughter to seee lion witch and wardrobe to celebrate.

I hope you all have an excellent weekend, thank you for being here