As part of this year’s awareness events in Edmonton – I was on the local TV news a couple of times.
Each of the times that I was on the live morning show, the Meteorologist (Mike Sobel) approached me after the fact with some really good questions.
I want to address the most recent question now.
He asked about Bladder removal as an option.
I have not talked much about a Radical Cystectomy, sometimes called an “RC” or “the surgery” (Bladder removal) for a couple of reasons. I will get to those reasons at the end – you will probably understand by the time I get to it.
It comes down to the fact that Bladder Cancer treatment options are kinda binary – it is one way, or the other. In some cases over time – you get to go one way, then must go the other.
I will try to summarize in the most simplistic of terms, the issues, and process.
I have described the Bladder Cancer journey to people in this fashion – the cancer is contained in your bladder, and has not escaped the bladder. While contained, the Oncologist may use treatment (BCG) to try to get it under control. If control can be obtained, all is good. If control cannot be obtained, or if it is discovered to be escaping, or almost escaping the containment of your bladder – bladder removal is pretty much the only option. This way you remove the entire system that contains the cancer, before it gets into the rest of the body and causes no end of problems.
The RC is a pretty invasive procedure that takes many hours. The people I have talked to – seem to have been 8 hours on average. Hospital stays at the end – usually in the 2 week range. Recovery measured in months, more than a year to a semblance of normal.
When preparing for an RC, the surgeon asks if you have a preference of “internal” or “external” diversion. Although you get a choice at this point in time – if you requested internal, you might not get it.
Internal diversion – usually a small fake bladder is made from a section of your bowel/colon, and plumbed into the system. So, your recovery from the procedure also needs to incorporate the plumbing of that system(the other bodily exit) healing and getting back to normal.
External diversion – just like it sounds. Ostomy bags on the outside of your body.
While they are in there – Prostate removal, usually included for the same low, low price as part of the package deal.
I mentioned that sometimes people may want internal diversions, but cannot get it. The biggest factor there, is the ability to reconnect to the urethra plumbing. If the tumours damaged the exit valve, they cannot plumb in another. Make sense? mostly because the control mechanisms for the valve are needed – and cannot be replaced.
So this means the only other option is the bags that you will then need to drain etc.
Once the bladder is removed, and replaced with a ‘neo-bladder’, your body will need to relearn some very basic things that you learned in order to get out of diapers – many, many, many years ago …. How to pee.
I know that this sounds odd – but your bladder was an integral part of your bodies complete system, mostly working in harmony with all the parts… nervous system that did so many things automatically, you just didn’t realize.
For example – lets recap what gets lost:
1 – the sensation of having a full bladder – the bladder is now on a table, maybe in a jar – who knows – but with it was the pressure sensor that said – “ok, full now – best do something about it”.
2 – How to open the dump valve – you are ready to let it flow, you think about it and it happens… but the central computer system receives an error… it needs to rewire the system and that takes time.
3 – muscle control – how to squeeze the contents out…. Again, the computer wiring is messed up, your body needs to relearn somethings.
I am sure there are others – but these 3 points – are not insignificant. Yes, I have met many people who have gone through it, and have normal lives…. They are almost all beyond 5 years since their surgery.
These are the things that make bladder preservation the priority. Although removal is a very dramatic conclusion – does anyone want to have it removed as a precaution if you don’t have to? As I have told people – my diagnosis results in a quality of life change – some question if my more than 3 year journey of bladder preservation is the best option – but what really matters right now – it that it is my, and my oncologists, preferred option.
Anyway, thanks much for following along on my journey – we don’t all know where it will go, but isn’t that going to be the entertaining parts.
As always, feel free to comment, share, like, and subscribe. I have some interesting observations that will start to trickle into my blog posts – just to keep it interesting.