Community Views: Radical Cystectomy and Quality of Life

A bladder cancer diagnosis comes with many life changes. As you process the diagnosis, you hear treatment options. One treatment is for a radical cystectomy, which is removal of the bladder. This feels scary for many people. You may be wondering, how can you function without a bladder? You may also worry about your quality of life after this surgery - this is all incredibly normal.

We asked our Facebook community for their thoughts around cystectomies: "Are you hesitant toward the idea of a radical cystectomy (bladder removal)? If so, what makes you nervous?"

The responses were highly positive. You shared how your quality of life improved following cystectomy.

No regrets

After a period of adjustment, most of you enjoy the outcome. You do not regret the choice to remove your bladder.

Without a bladder, urine removal requires new plumbing, but you have options for your urinary diversion. The options are an incontinent diversion, a continent diversion, or a neobladder.¹

Whatever your choice, cystectomy vastly improved your quality of life.

"After diagnosis, the day to remove my bladder couldn't come soon enough. The new normal is nothing compared to the alternative!"

"Living a very normal life now only 8 months later. Never looked back. Never regretted it for one moment."

"I've had mine for 2 years now, and it is just another thing to tend to, but I feel it was my best decision."

"It was a no-brainer decision when the ultimate goal was to keep living. I wasn't going to give up!"

A new found freedom

Having the cystectomy procedure eliminates struggles from your life. You do not need regular cystoscopes to monitor growth or recurrence. Needing the toilet every few minutes is a thing of the past. Fear of a future cancer diagnosis lessens.

"I have not missed cystoscopes and hospital visits. With the fashion industry now, there are endless clothing options."

"I don't miss having to pee all the time. Very inconvenient for a mailman. I had surgery in March 2020 – no regrets."

Why did I wait?

Cystectomy often feels overwhelming. Many people even delay or avoid the procedure. Going through life without a bladder is a foreign concept! It is unfamiliar and scary. After completing the procedure, you wish you had done it sooner. Many feel so much better having their bladder out.

"My hubs fought it for 6 years. "Hell no," he said. He was in horrendous pain as BCG wrecked his bladder. He urinated every 10 to 20 minutes, 24/7. Six years of pure hell, no sleeping, no days without pain. He is 6 weeks post-op with an ileal conduit. I believe he is pleased with the results. It is so good to see him sleeping at night, and his pain level is greatly reduced."

"At first, I didn't want to do it, but my family and friends told me it was for the best. I am so happy I had the surgery and have a great life. I do not ever regret the surgery and am loving every single day."

Reducing risk

Many of you opt to proceed with the cystectomy to protect yourselves. Removing the bladder reduces the chance of recurrence or metastasis. You take every action to improve your life expectancy.

"No hesitation at all from me. Not a regret in the world. My cancer is gone, and I still do all the things I used to do when I had my bladder."

"I want that critter out before it spreads."

"Life is just fine with new plumbing with just a few minor changes. There will come a time where you don't really think about it."

What the research says

Your responses were overwhelmingly positive around cystectomy and how it improved your quality of life. However, the research is more mixed.^2,3

Studies show that cystectomy does not always enhance quality of life. Changes after surgery can be hard. Sexual and urinary problems are common side effects.^2,3

Going through counseling before surgery is helpful. There you can hear about the risks and benefits of cystectomy. You can also ask questions and decide which urinary diversion is best for you. Preparing for the changes improves your outcome. If you feel your quality of life is better, it is!^2,3

We appreciate everyone who shared their experiences. Deciding to have a cystectomy is very personal. Sharing insights about cystectomy reduces the fear and mystery.