BCG or bladder removal

I’ve also considered getting a second opinion privately.

I had my second opinion from James Catto in Sheffield; he wrote an educational article, talking about the benefits of early Radical Cystectomy versus later RC, following unsuccessful BCG immunotherapy (especially in his steel worker patient base).

Interestingly, despite this article if I hadn’t already come into his consulting room almost decided on Radical Cystectomy, he would have suggested BCG immunotherapy as his recommended treatment. (whilst my consultant in Bradford had been very much 50/50 & only RC when I absolutely pushed for a recommendation)

He did admit that in cases of high grade non muscle invasive bladder cancer with CIS (never mind my extra risk factors) if your primary consideration is living as long as possible choose RC over BCG, but also that most people don’t, mainly due to the ensuing sexual dysfunction. 

However, people don’t die having BCG immunotherapy, but there is definitely a peri-operative mortality risk to major surgery!

Sorry, I realise I probably haven’t helped your decision process much at all!

Best wishes 

Gareth

Hi Jessie15

I had two TURBTs with G3T1 (with squamous differentiation) advised after the first (3 x1.5cm tumours), and G3Ta (one tumour) after the second. Around 10 weeks between the two. The consultant I was seeing at the time (Watford) offered BCG or RC, with a strong push for RC. After the second TURBT I had carefully considered the options based on what I understood at the time and opted for RC, at which point I was referred to the surgeon at another Trust (Lister).

Met with the surgeon who appeared quite upset that I hadn't had any treatment up to that point (~4 months from the first TURBT), but advised that the best course for me in his opinion would be BCG, with the option for RC if things didn't work out. I was 63 at the time, and am male.

Now had 15 BCG instillations and OK so far .. next cystoscopy on Monday (fingers crossed).

I was somewhat further assured that after the BCG induction course he performed a rigid blue light cystoscopy and found nothing untoward. All other cystoscopies have been flexibles, and no recurrence so far. I have continued my care with the Lister Hospital, Stevenage since meeting with the surgeon.

The selected treatment is a difficult decision, but one that we all must make. I have no regrets on following the advice of the surgeon, but we are all different and whatever you decide will be the right decision for you.

Thank you very much for taking the time to reply. Interesting how the surgeon differed in opinion. I am being treated at Hilllingdon hospital. I would be interested to know who your surgeon was - my sister in law mentioned there was an excellent consultant urologist based at the Lister. I was very much directed towards BCG. Will hope that this is successful. 

Wishing  you all the best for your forthcoming cystoscopy. 

As you have started on BCG without adverse side effects so far, seems sensible to continue with that while you seek more information/opinion. I think I mentioned that I was TaG3 & given the option, decided on surgery. My choice was for peace of mind, among other reasons, but it is a major undertaking. Lots to weigh up, considering your personal circumstances and so on so as to make an informed decision. The big problem is not knowing who will be in the approx 30% cured with BCG, or the remainder who will need more aggressive treatment (surgery with or without chemo, or maybe chemo plus radiotherapy), or the few who become incurable. It is undoubtedly a worry, but once you have made a choice, based on all the information available, hopefully you will feel more confident going forward. Best wishes.

 Teasswill very good points

I asked my specialist nurse what the success rate of BCG was and she did not know. Is it really only 30%? That makes me worry - I’m more inclined to surgery if there is recurrence. Thanks for your reply. 

Hi Jessie

I think the BCG success rate is ~70% from memory, but quite a few drop out of the treatment due to side effects, and some go on the RC later.

PM me for the surgeons name. Don't think it right to identify an individual on an open platform. Will also be able to give you further info if you want.

Jessie, recurrence rates on BCG are I am afraid pretty high, as high as 40%. It’s not a reason in itself not to have BCG, but I suggest you familiarise yourself with likely recurrence e rates for your type / grade of cancer.

Hi Jessie,I would be inclined to seek a second opinion in view of the Squamous differentiation.I had this type and needed a cystectomy.Love Jane x