Top Questions I Get Asked About Bladder Cancer: Part 1
Last updated: August 2022
I was diagnosed with bladder cancer 10 years ago. I did chemotherapy and then had a radical cystectomy and prostatectomy. I will tell anyone who asks that I don't think I'm the "average" outcome.
I have never had to catheterize after my initial neobladder install. I don't leak at night. I don't have leaks during the day except for rare occasions when I have a full neobladder and stand up quickly or try to exert myself in some way - grabbing another chicken wing? I have never had a urinary tract infection.
I am for all intents and purposes – the poster boy for bladder cancer. Note: That was not on my high school "vision board."
Thanking my stars and scars
I say all of that because when people find out I had bladder cancer they ask a lot of questions, and my answers may not be the same as someone else's. I read the posts here and the comments, and I know others have had a much harder time with their cancer experience. I do thank my stars (and scars) every morning when I urinate without blockage or other issues.
Here are some of the most common questions I get asked about bladder cancer:
- Do you still urinate the same way as before?
- Can the cancer come back?
- How do you know when to go to the bathroom?
- Did catheterization hurt? Always the number 1 question from men when they find out you have to do that with a neobladder.
- Can you still have sex?
My neobladder function
Because I have a neobladder my urine still goes out through my urethra and out through the penis. It's all the same as before. Except- it is easier to go sitting down than standing up. If I need to, I can stand at a urinal like I used to, but I know if I can sit down I can more quickly and completely empty my neobladder.
Recurrence and staying vigilant
Sure, cancer can come back. I still go in every year for a CAT scan, though I have been told that may stop soon.
Getting cancer doesn't eliminate the chance of getting cancer again. So, stay vigilant. Not just about bladder cancer but also get your colonoscopies, get your melanoma checks, and so on.
Once you get cancer your antennae go up on all sorts of health issues because you know how close you came to a real problem.
Knowing when to go to the bathroom is governed by my alarm app on my phone.
I can't feel when the neobladder is full like "normally" equipped people so I set an alarm for every 4 hours or so. My doctor cautioned me to not go too much longer than 4 hours as he didn't want me stretching out the neobladder too much which may cause bigger problems in the future.
Catheterization did NOT hurt. Never did.
There are multiple types of catheters with different ends, and some come pre-lubricated and some you need to add lubricant to make it easy to insert. I never had a problem and never felt anything other than the weirdness of pushing the tubing in. Let me be clear – not uncomfortable or painful just... Weird.
Sex after bladder cancer
The ability to have sex after a full cystectomy and prostatectomy is pretty much in the hands of your surgeon and the extent of your cancer. As always – your mileage may vary, and you and your doctor can address this issue together.
In my case, I did not regain the ability to easily have an erection due to nerve damage during the surgery. To be fair the doctor told me I would have a 60 percent chance of this happening, so I wasn't too worried or surprised.
I tried the Viagra route but the only thing that worked for me was a local injection (yeah – you know what that means) of something called "trimix." Works great. Just not really spontaneous. But... It does work.
Those are the bottom 5 of the top 10 questions I get from folks who hear I've had bladder cancer and have been fitted with an aftermarket bladder.
Feel free to add your questions in the comments section and I'll be happy to share my experiences. Again – your experience may and will be different. Work with your healthcare provider to address your needs.
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