Advice re BCG

Hi Pru1 and welcome, I was diagnosed with a T1 G3 5cm high grade cancer in Oct 2023 and I am receiving bcg treatment at the moment 12 in of 27 treatments to be spread of three years. So far the only effect I have is urgency which lasts at most 24 hours. I'm sure there will be others along soon to reassure you, when asked about RC I was advised to go down the bcg route with RC as backup for the future. Best wishes on you BC journey. Love Lynn

Hi Pru,

Welcome to the forums, but sorry to hear about your diagnosis.

I was diagnosed G3 PTA two year's ago now and was put on the BCG program. 

I wasn't offered RC although it was discussed.

I've had 16 BCG instillations with number 17 on 18th Feb. 

The actual process is pretty painless for me, slight discomfort whilst they insert the catheter. Which is only in for a couple of minutes and is a lot smaller than the TURBT catheters (which was a huge relief for me).

I get urgency for about 24 hours after each instillation, which is tiring. I've also had inflammation which caused a little bit of discomfort.

It's not a walk in the park by any stretch of the imagination, but my side effects have been manageable. Plus I'm on 6 monthly breaks between each cycle now which helps.

However this is my personal experience, and some people do have other side effects. There are quite a few people on here going through BCG with varying degrees of effects.

The option to go to bladder removal is a personal choice and there are many people with this experience on the forum also.

Personally, I'm pleased I went the BCG route, even with the discomfort s.

Wishing you all the best.

Trevor 

My OH had 6 BCG, check turned into a second TURBT as they found a new papilloma, so a regrowth like you. Offered more BCG, RC or Mitomycin. Opted for Mitomycin. I'm not sure he even managed to retain it for the time [?1 hour?] beyond the first or second one of six. It certainly got progressively harder to hold it.

But he still has had no recurrence in now getting on for six years and celebrated his 80th birthday last summer.. He was G3 PTa . But his bladder was completely coated in growths at the start. He didn't find either the BCG or Mitomycin debilitating beyond frequency on the day and fatigue that day and the next. Being retired anyway he just took it easy.

Hope this helps, 

Denby

Hello , Pru1. Welcome to the group and sorry to hear of your diagnosis. I was diagnosed with CIS and went for BCG, but the blue light cystoscopy after the induction course showed that it had not worked. Unfortunately, it seems that nobody really understands yet why BCG works in some instances and not in others. The induction course of BCG was, while not exactly pleasant,  entirely tolerable. I can't speak for the effect of maintenance courses.  Do I regret going for the BCG? No. However, I suspect that I'll be offered three choices: 1) Another try with BCG, 2) Chemo/radiotherapy 3) Cystectomy, probably with neo-adjuvant chemo. While it is well understood that cystectomy can be life changing, so can both of the other options, there are plenty of people around here living well with stomas or neobladders, and option 3 is the one I will probably go for. 

I don't think that there's a 'one-size-fits-all' right answer, but I do think that, should you decide on BCG, you would be well advised to have a plan B, with appropriate timing, should the BCG not work out.

Good luck Pru1.

Steve

 Pru1  what was your grading from the histology from TURBT 2 as you don’t give the full and correct grading. I was G3PT1 on TURBT 1, and G2PTa on TURBT2. After TURBT 2 my own thinking was to go down the RC route, because of the risk of progression. However I was advised to go with BCG, and went with the flow. I reacted very violently to BCG, and ultimately could not tolerate it. Many can tolerate it no problem. I then went for an RC last autumn, and all histology came back clear of cancer cells, so at least the BCG worked in the bladder. I don’t think I was a good BCG patient as the whole time I was on it I was worried about progression and recurrence. An RC after a BCG course where there is progression has a significantly worse prognosis in many cases than having a RC straight away. It’s a dilemma for the clinical staff and patients as they do not possess a crystal ball. That said BCG can be very effective against HG BC. You pays your money and takes your choice, and ultimately it is your choice. In hindsight I wish I had gone down the BCG route off the bat. Life post RC is good and I am doing most things I did before. It’s major surgery and not without risk. I am glad I did it. I am not sure this answer will help you, there are so many factors to consider, but that has been my experience. I am at the moment free of cancer. Leo

Leo1 sums it up pretty well. It is a common dilemma with NMIBC G3. NICE guidelines say you should be offered a choice of RC or BCG. Cystectomy is major surgery so not be undertaken lightly, but does give best chance of cure, compared with BCG. It's a gamble because BCG might cure, but no-one can predict your personal outcome. If BCG doesn't work, or only delays recurrence, cure is still possible, but there is also the small risk of BC becoming incurable. Regrowth at second TURBT does sound worrying - perhaps you need to question your consultant about the options.

Really you have to weigh up all the pros & cons, risks and benefits alongside your personal circumstances. I was given the choice and opted for immediate surgery, which I have never regretted. Best wishes.

Hi Granny M , thank you so much for your reassuring reply, it's a very worrying time but good to hear that you are coping with the effects which don't sound too bad. Good luck for the future 

• Hi Trevor,  thanks for your reply it's reassuring to hear that you are 2 years into BCG and even with the discomfort you are still pleased you decided to go down this route. Good luck to you  going forward 

• Hi Denby, thanks for your reply, I'm so pleased that your OH has gone for 6 years without recurrence. That certainly gives me some hope for the future. Best wishes
• Pru

Thanks for the response, as you say food for thought, it's such a difficult decision in that the effectiveness of BCG appears to be so variable. So pleased you are doing well and remain cancer free

Best wishes Pru