Radical Cystectomy

Hi Coojee, is this your only option?

My other option is 20 days of chemo & radiotherapy. Or do nothing & rely on pathway blocking.

My personal advice is to explore all other alternatives before making this decision.

My questions are how old are you?

How active are you?

Do you work?

Do you have any hobbies?

What is overall your fitness and dexterity?

Is your wife in general good health, I ask this because she may have to give you help in certain conditions.

Im 63, fairly active. Walks in the countryside. I enjoy flying drones. Im self employed in computer work. Plus dome photography. My wife is younger, active & desperate for my to take the diet & pathway blocking route.

What has the scan/ scans picked up in your bladder?

That the tumour has spread to the prostate & seminal vesicles. The 2nd scan shows the tumour has reduced in size.

Remember, apparently you are told there is no wrong decision on the way you want this problem sorted, however I was pushed toward having a radical Cystectomy.

What part of the country do you live in?

Hi Coojee

I have a urostomy and a colostomy. I manage both very well. I’m not saying it’s always easy, but as a I didn’t have an alternative, other than palliative chemotherapy, I’m glad I was given this option, and delighted to still be here and enjoying my life with my cancer successfully removed. 

Well Coogee, answering your original question.

The main issue are bag leaks, like anything made it has a level of quality control and sometimes the bag you will use may not have the same robustness as it should have, thankfully this does not happen often, but when it does it feels like one of the worst days of your life and has the effect of putting you on a downer.

My next issue is when you are very active, as you can imagine this puts stress around the sticking area of the bag and this can cause this to fail prematurely, this will probably arise more often in hot weather as the glue starts to soften, if you are not aggressively active it should not be an issue.

Aesthetically the bag will bulge out when full; this will only be an issue if you have body image issues, you are better emptying your bag when it is not more than half full.

You do not know when you are urinating, you can only tell when touching where the bag is, this will give you the indication when to empty it.

When you take the bag off you become fully incontinent in this area, urine could spurt out at any time and you will be given no indication of this.

I used to like sleeping on my front but can no longer do this, I now sleep on my back or one side, remember you will be hooked up to a night bag that will probably be on a stand at the side of the bed and the tube will run from the bottom of the bag attached to you to the large night bag, a water proof mattress protector is a must just in case of any leaks but a usually very rare.

You have to order your supplies weeks before hand and sometimes you may have to chase this up, running out of supplies is not an option so you are solely dependent on the company you choose to supply your medical equipment, personally I have been let down once on this issue and the stress and anxiety it causes is immeasurable.

I know a lot of things that I have wrote down may be distressing to hear, however they are the truth and I believe in straight talking and not glossing things over, I personally live a happy life, I go to work and have hobbies fishing, walking and cross country mountain biking, I have a wife 4 kids and a few grandchildren chucked in, I just tell myself there are many people in the world that are much worse off than myself so my advice to you is stay positive and stay strong, there are many people on this site that will give you advice and support including myself.

Im in the Scottish Highlands.