Radical cystectomy Vs BCG treatment choice with aggressive non-muscle invasive bladder cancer

Fantastic news - really pleased the BCG immunotherapy is working well for you.

Thanks

Gareth

Thanks for the feedback. I’m not a medic, quasi-medical - I’m an optometrist & I agree wholeheartedly with everything you’ve written; obviously you don’t want to over treat any illness & that was primarily in my thoughts when researching treatment options. Best of luck with your BCG treatment.

Thanks

Gareth

I’m still not sure what option I will take. My 2nd TURBT is scheduled on 4/7/24 (election day!!!). If that is completely clear then I would probably take the BCG option with close surveillance. If there is any doubt on 2nd histology, then I will go for the RC. I have exactly the same thoughts as you. I’m sure your op will go fine and you’ll recover in no time. Please keep us updated how it goes. Best wishes.

Hi Hopeful 

If I was in your position I would be following exactly the same BCG treatment course as you.

Hope it continues to work.

Best wishes 

Gareth

All sorts of statistics about BCG treatment are quoted, but not necessarily with full information. Many will say 70% patients are treated successfully. To qualify, meaning they are still clear after the first 6 weeks treatment, or indeed after the full 2 year course. My surgeon told me 50% patients having BCG will go on to have RC eventually. At the time of my decision making, of all patients having BCG, my research told me that 30% will remain clear long term, 30%  go on to survive after other treatment (surgery +/- chemo, or chemo-radiotherapy) and sadly 30% become incurable. 

The big problem is not knowing which category you will be in. Having CIS is more risky & having CIS as well as TCC even more so. 

I'm a retired optometrist!  I was TaG3, offered BCG or immediate RC. At age 56, after much thought & research, I opted for (prophylactic) RC. As my surgeon put it, I was prioritising cure. 

It enabled me to get on with my life with the peace of mind I wanted. Now nearly 13 years post op. Hope all goes well with your op.

PS Take the 3 - 4 months recovery as a minimum for healing as defined by the surgeons! I did manage a phased return to work at 3 months, but it was 5 - 6 months before I was doing all usual activities, and 8 months before I shed the end of the day fatigue. So don't expect to do too much too soon - full recovery is slower than they quote! Best wishes.

Hi Teasswill. Can I please enquire your source of research as 30% incurable rate seems incredibly high for patients on BCG treatment. Are these patients who are dropping out from treatment/ non-compliant etc?? I’ve been told that with close surveillance it is highly unlikely that a recurrence will have enough time to become muscle invasive. Is there any evidence to suggest that non-muscle invasive TCC can also spread outside and become incurable? I would really value your opinion on this as you’ve obviously gone through the process and I’m considering my options. All the very best.

Apologies, my research was done 13 years ago & I no longer have the references. The difficulty in finding statistics is that parameters vary. For instance, some papers only consider T1G3, or only look at a specific time span for being clear/survival. 

From encounters with other patients, I can say that the risk of BC becoming incurable despite BCG does exist, although I cannot put figures on it. There is also definitely a risk, however close the surveillance, that a recurrence can be muscle invasive. There are plenty of respectable papers online that report this. TCC alone is probably the least risky case. 

Even with only TaG3, my surgeon would only say 'unlikely' that it had already spread. A number of patients get upstaged at time of surgery, ie more cancer is found in tissue biopsied post op that had not been detected prior to surgery.

It is possible that improved diagnostics eg with blue light, also alternative immunotherapies, have improved the statistics. Even incurable cancer may be treatable and still give reasonable timespan for survival.

Thanks for clarifying. I think no one can give you a 100% guarantee. Even RC doesn’t give you a life long recurrence free assurance. However the likelihood is very small. So we are dealing with balance of probabilities. With T1G3 (no other adverse features), I have been told of a 5 year disease free chance of 90% with RC and 85% with BCG. Yes there is a chance of recurrence during BCG treatment but it is very unlikely to go on to become muscle invasive with the frequent cystoscopies that are performed for surveillance. There is no ideal solution and hence it comes down to individual decision. Best of luck to everyone on their journeys.