Questions I Get Asked Most About Bladder Cancer: Part 2
Last updated: May 2023
This is the second of two posts about the questions I get most when someone finds out I had bladder cancer and had a neobladder as my urinary diversion.
To recap - I was diagnosed with bladder cancer 10 years ago. I did chemo and then the radical cystectomy and prostatectomy.
Now... On to the top 5 questions I usually get about bladder cancer:
- How did you find out?
- Did it hurt when you had bladder cancer?
- Does it hurt when you urinate now?
- Do you have a bag? And when they find out I don't have a bag...
- Do you need to wear diapers?
How I found out about my cancer
I found out about my cancer because I was having recurring bouts of blood in my urine.
I figured it was just small kidney stones and didn't give it a thought. Until I had a blood clot form in my bladder that blocked my urethra and made it impossible to urinate. When I did provide the pressure needed to dislodge the clot I went off like a water weasel all over a hotel lobby restroom.
Before you ask - yes, it looked like a murder scene and yes, I did clean it up before anyone saw it. Then I went straight to the emergency room because I thought I was bleeding internally.
Bladder cancer wasn't even number 100 on my list of things this could have been. It should have been number one on the list the first time I saw blood.
Did it hurt?
My cancer didn't hurt until it was well along, and I was already diagnosed and in chemotherapy.
For some reason, my cancer caused unbelievable bladder spasms which, if you've ever had one, you know they can be extremely painful. That only lasted a few weeks as I went in for my cystectomy not long after the spasms started. Other than that, I wouldn't have known I had cancer if I didn't have the event in the hotel bathroom.
Pain when I pee?
It doesn't hurt to urinate now. I do feel some interesting things as small clumps of mucus are expelled – sort of like feeling a bump in the road in a car but on the inside of your penis. Weird but not the least bit painful.
I do not have a bag. I opted for the neobladder for many reasons – travel, age, and more.
Everyone is different so listen to your doctor about what option is best. I also had to tell my doctor my plan B – bag or "Indiana pouch," because once they do the surgery they will see if there is any cancer in the urethra.
If they do find cancer elsewhere, they may not be able to do the neobladder and that is when a different urinary diversion option may be necessary. I was lucky and didn't need a different option.
Just a heads up... When I woke up from surgery, I had an external urine bag and thought they had gone with plan B. But they simply didn't tell me that even when you get a neobladder, you get a temporary bag to manage urine while the neobladder heals up.
Would have been nice to know ahead of time to save me some angst when I woke up in recovery.
Adult diapers for the win?
I have great urine control, so I don't need a diaper. Some people have less control so they may but, again, I'm lucky.
I also did Kegels religiously when they told me I would need to do that to be continent.
Kegels strengthen the one muscle left to hold your urine in the neobladder so do them! Once they take your bladder and in many cases like me, your prostate, you no longer have all the muscles that you used to have to keep your urine inside you.
Do your Kegels. It will make your experience much better, in my opinion.
Those are the top 5 questions I get once folks who hear I've had bladder cancer. Feel free to add your questions in the comments section and I'll be happy to share my experiences. Again, your experience may be different. Work with your healthcare provider to address your particular needs.
Has cancer impacted your mood during the holidays?