The Pros and Cons of the Cystectomy

You hear the news and it feels so black and white. When doctors tell you it’s time to remove your bladder, it’s hard not to be afraid. Losing an organ is all-new territory for most. But there is good news.

Weighing available treatment options

For starters, the choice doesn’t always have to be as black-and-white as “keep or not keep.” Several of you mentioned the options, from neobladders to alternative therapies, which have gotten you through the diagnosis. Others of you have had your bladders removed, and, after recovery time, life is more or less the same as it was before.

There are options.

Hearing directly from people with bladder cancer

To hear more about which options have served you best, we reached out to the BladderCancer.net Facebook community and asked whether or not you believed it was the best choice to have your bladder removed. Seventy members reacted, and more than 20 shared their stories.

Responses varied wildly. Here’s what you had to say.

Removing the bladder without regrets

The thought of losing your bladder may fill you so much with fear that you become paralyzed. Rest assured, this choice doesn’t need to bring a massive change in lifestyle. In fact, most of you who have had the procedure report that your life hasn’t changed much at all after having your bladder permanently removed.

“I had my bladder removed January of 2018, and the bag has not been problematic at all—it is second nature. I have been back driving trucks since six weeks after the surgery, and everything is okay.”

“I had my bladder removed in 1996 because of a muscle-invasive tumor. If that is necessary or your choice, know that the recovery period from the surgery was a month or so and not particularly hard. I chose a pouch, and it becomes second nature as long as you choose a quality brand. I had no choice, and I have no regrets or problems.”

Choosing a neobladder

Sometimes, we think we only have two choices, but in reality, there are three—or more—options. Some of you wrote in to share about the procedure of having a doctor construct a neobladder for you. If talk is leading toward bladder removal, perhaps this is an option you can discuss with your medical team.

“I had to have my bladder removed in 2013 due to interstitial cystitis. I had no choice. The surgeon took part of my intestine and formed a new bladder. He attached it behind my belly button. I cath every six hours through my belly button. Recovery was a nightmare for me, and I had some complications and had to have more surgery a few months later. But, I have no problems now.”

Doctors were able to save my bladder

And then, sometimes there are further options still. Some of you had procedures where doctors where able to remove the problem areas, but still spare the organ. For some, this might be an option at least worth inquiring about.

“I had growth inside my bladder in the very beginning when they detected the cancer was out of control. They went inside and cut everything—inside and around it—and I still have my bladder. I had excellent doctors.”

Turning to alternative therapies

For others of you, the thought of sacrificing an organ is too great—at least before you’ve explored alternative therapies. Some patients may want to jump right into surgery without wasting time. But others of you believe that doctors answer to a higher power, and that there are energies and forces outside the realm of science that can work wonders. For these, belief is often a great starting point, given that alternative therapies do have a higher rate of working for those who believe they will work.

“A bladder is worth fighting for and blessings do work. There is a power higher than doctors.”

“See about homeopathic options. There much info available. I would do anything before removal.”

The choice to keep or not keep the bladder is very personal

Electing to have a cystectomy or not is one of the biggest decisions you might face. Most people you know will have an opinion as to what you should do, but in the end, the choice is yours. Only you know what is right for you, and you’re the one who has to live with the outcome of whichever choice you make.

“I am speaking for myself: I have been dealing with bladder cancer since 2006. I’ve had lots of tumors removed, and now I have been clear for two years now. I really want my bladder removed so I won’t have to get those painful scopes ever again. So, each person has to do what is best for them.”

“To me, either choice can be reasonable. I, too, would fight to keep my bladder. But that’s just my personal opinion. A lot of factors go into making this decision. If there is no evidence of malignancy currently, I wouldn’t think a surgeon would want to do a radical cystectomy. It is such a major surgery with life-altering consequences. Whatever you decide, listen to your instincts and follow them. The final decision is yours.”

You are not alone

We wish to say thank you to everyone in the community who shared so candidly about this sensitive topic. Through your shares, we hope that those who are walking this path feel less alone, and more connected to those who can relate to this struggle. You are not alone.