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

Hi All

I've been reading this thread with interest. It's really useful to hear lots of people's experiences and thoughts. 

When first diagnosed I wouldn't even have considered RC , but reading other people's experiences on this forum has opened my mind to that option at some point.

However I've gone down the BCG route, I'm G3pta if that makes a difference. I'm aware I'm way behind the knowledge you guy's have.

My BCG course is three years, but I'm now on 6 monthly intervals, meaning I'm in the hospital 4 times every 6 Month's. This is very doable for me. The BCG isn't pleasant of course and I've been very lucky with my side affects (touch wood).

I struggle to understand quite a few things though, perhaps I should do more research myself, but you go down rabbit holes with conflicting outcomes.

I mean if I'm having biopsys every three months then what is the chance if my bc comes back it will be muscle evasive. Can it grow that quick? I'm assuming that the biopsies will pick up whilst the cancer is very small.

I've read on this forum amazingly good outcomes with both BCG and RC (and other treatments) which is very encouraging both ways.

I've also read but don't fully understand that the cancer can come back after RC. Or maybe I just dreamt it...

I guess every one has to make their own decisions with the help of the professionals of course. My decision and reasoning for BCG is that it might work. I'm still quite young (ish 53) so if it does come back then hopefully I'll still be fit for RC. My consultant mentioned a operation with a robot, which helps recovery apparently.

I'm also not ready to give up erections, so will persevere as long as possible. 

Again thanks everyone for your posts I really do find them incredibly helpful (even it it makes me a little embarrassed that I don't have your cancer knowledge after all this time)

Sorry for the waffle and I appreciate that I've not added any real insight into the discussions going on, but I just wanted to say thanks.

Take care all.

Trevor 

Teasswill has found peace of mind it seems after her cystectomy. That would make it worthwhile to me regardless of the sacrifices associated with it. I hope you dispose of the rodent soon.

I’ve now been prescribed medication, to help pump the blood through my heart, for my previously unknown heart condition - possibly Hypertrophic Obstructive Cardiomyopathy (HOCM) - think Christian Eriksen. Whatever the condition is, it’s obviously mild as I’ve lived to 53 now with minor (if any) symptoms.

However, it seems likely that this is the cause of my poor performance on the CPEX (exercise bike) test during pre-assessment - my o2 intake plateaued at 50% of the expected level. Whatever the cause (there is a possibility it could be asthma related) this increases the operative mortality risk considerably.

My initial preferred treatment was Cystectomy, rather than BCG. However, the CPEX test tilted the odds towards BCG as then being the better option. Even though I had prepared myself for RC, with the ensuing long operative recovery, urostomy bag & loss of sexual function I won’t deny that a small portion of me was quietly delighted that I now wouldn’t have to go through the operation.

Having said that, having been on heart medication for a week now, I’m planning to have another go at the CPEX test next week - will my medication (and my deep breathing exercises to aid my asthma) have improved my o2 intake? If so I’ll jump back into the RC queue, if not I’ll stick with BCG until I need RC due to tumour appearance.

I’m aware that even RC isn’t a complete cure - you can still get growth in the urethra / ureters, but assuming the operative risk wasn’t too high then I feel that would still be my preference.

Best wishes to all

Gareth

Hi Gareth, must have been a shock for you to find out about the tickets problem, but on the positive side at least it can be dealt with now and hopefully get sorted out. ATB, Leo

Hi Trevor,Cancer can come back after cystectomy as cancer cells can break away and seed themselves in other areas of the body.The pelvic/abdominal area is one place it can spread along with the lungs,bones,liver and brain.The rarer types of bladder cancer tend to be more aggressive.I had Squamous cell which is the most common of the rarer types.Robotic surgery is amazing,before the cystectomy I watched a clip of the robot peeling a grape.I had a mixture of robotic surgery and general.It was meant to be all robotic but there was a complication so I have a big abdominal scar as well.Best wishes with your treatment.Love Jane x

I have read that BC can recur 5, 10, even 15 years after treatment (didn't specify what treatment). Initial diagnosis has an influence - G3 plus CIS is the most risky situation, but I guess that is likely to recur (& progress) sooner rather than later. 

Recurrence after RC also depends on pre-op stage & grade & post op path report. My surgeon told me that as many as 25% patients are upstaged after surgery ie more cancer is found deeper/elsewhere than originally diagnosed. Hence removal of adjacent organs, nearby lymph nodes, and chemo is sometimes recommended pre or post RC. It is possible that before surgery, cancer cells have already escaped into lymph nodes, blood, or other tissue, that are undetected. These will lead to spread. 

Also, as the ureters & urethra are also the same tissue, these can be sites for recurrence. 

Lungs are the commonest place for spread - I had chest X ray as part of follow up tests for 10 years post op. 

PS Most sources indicate that 70% patients having BCG will be clear after initial course of treatment, but at least 50% will have a recurrence at a later date. Some of these will be higher stage.  One paper says 60% have recurrence within 2 years.

Various factors affect likelihood, but no-one can for sure say who is most risk. Next steps also depend on all sorts of factors. 

I was upstaged to a T3b but was weeks away from being a T4 and inoperable so I do feel fortunate to have got the surgery just in time.The pain was getting unbearable so it was a relief to wake up from the op and be rid of that.

Hi Gareth, 

Sorry to hear about your additional complications. That's all you need during these already troubling times.

I wish you all the best.

Kindest Regards 

Trevor 

Hi Jane,

Cancer really is the gift that keeps giving. Good to hear about the Robot, so appreciate the heads up.

Take care.

Trevor