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Operation game with the bladder removed

The Challenge of Deciding Whether To Have Your Bladder Removed

One of the biggest challenges for bladder cancer patients with recurrent non-muscle invasive disease is deciding whether (and when) to have a radical cystectomy (bladder removal surgery). As one urologist once told me, “bladder cancer is highly unpredictable.” Some bladder cancers progress even if they aren’t expected to; others do not progress even if they are expected to. There simply isn’t enough known yet about how to identify which cancers will progress and which ones won’t. But I am excited to be a caregiver adviser to a study just funded by the Patient-Centered Outcomes Research Institute (PCORI) that aims to provide patients with some evidence-based guidance in choosing a course of treatment.

The patient is caught in the middle

Early stage, high grade bladder cancer (Stage Ta or T1) is typically treated with TURBTs (surgery to remove the tumors) and BCG. Often, “maintenance” BCG is recommended to reduce the likelihood of recurrence. For some patients, this is enough and the bladder cancer does not recur. But for others, it keeps coming back. Or the side effects from BCG become too unpleasant.

The tough question

These patients are faced with the question of whether to have their bladder removed. One of the most frustrating aspects of cancer in general is the lack of clear-cut answers. If someone could definitively say, “if you have your bladder removed, you will be cured,” it would be easy to decide. But no one knows that for sure. Some patients have a radical cystectomy and still end up with metastatic disease a few years later. Other patients opt not to have the surgery and do not have recurrences. Doctors know a lot but they—like the rest of us—don’t know anything for certain.

What should you do?

I think the best way to approach this quandary is to seek multiple opinions from doctors who see a lot of bladder cancer. If you get three opinions from three doctors and they all recommend bladder removal, well, that’s a convincing consensus. However, if one doctor urges you towards surgery but two others suggest more conservative approaches, that also gives you something to consider.

The status of your health, aside from cancer, and your willingness to undergo a major surgery should also factor into your decision. If you are otherwise healthy and strong, the surgery may not seem so daunting. Surgery might seem easier than continuing to deal with BCG and its related challenges. But if you face other health problems and might have trouble recovering easily from surgery, that is important to consider as well.

I have observed that many patients worry about a decreased quality of life without a bladder. But I have also observed that the patients who are living without a bladder are often there to support those considering surgery. And to tell them that it’s not so bad and that life can be pretty normal after the surgery. I have also met Stage IV patients who wish they would have acted sooner to have a radical cystectomy. They regret that they were too worried about saving their bladder and didn’t worry enough about saving their life. (It seems common that patients somehow just can’t imagine that their life will really be at risk.)

A new study may offer insight

Dr. John Gore, a urologist at the University of Washington, and Dr. Angie Smith, a urologist at the University of North Carolina-Chapel Hill, are leading a new study that aims to provide guidance to patients and clinicians regarding this challenging question.

The PCORI-funded study will follow, for three years, patients who choose bladder removal as well as those who choose other medical therapy. Patients and caregivers will be asked about their experiences and outcomes with each of the treatments as well as how they decided upon their course of treatment. The project summary states: “The goal of this study is to provide information to future patients, their caregivers, and their providers so that patients can choose the treatment that meets their needs based on the outcomes and preferences of patients like them.”

Ultimately you have to trust yourself

The decision of whether and when to have a radical cystectomy is highly personalized. It is— and should be— the patient’s decision. Hopefully, this new study will help. But ultimately, a patient has to decide for him or herself. Doctors, family members, friends, caregivers, and others will have opinions. They may cajole or pressure you in one direction. Gently remind me them it is your body, your life, and your choice.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • chipper
    1 week ago

    Choose removal ( with neobladder replacement) 10 years ago. Have no regrets, live pretty normal life. There were a few obstacles to overcome, but overall I am convinced I made right decision.

  • Sarah Wallin moderator
    4 days ago

    Happy belated 70th @chipper! Did you do anything special for that milestone birthday? It’s wonderful you’re still active and help veterans with claims with the VA. What an honorable deed that you are involved in. Thank you for sharing that with me. We’re glad to have you as part of this community! -Sarah (BladderCancer.net Team Member)

  • Sarah Wallin moderator
    1 week ago

    @chipper, it sounds like your doctor was very clear in presenting your treatment options. I’m glad you’ve been pleased with your decision to opt for the neobladder, and that it’s been going well for you, too. -Sarah (BladderCancer.net Team Member)

  • Sarah Wallin moderator
    1 week ago

    @chipper, I’m glad to hear your neobladder helps you live a pretty normal life. How did you come to the decision to opt for a neobladder? Were you able to get back to doing the activities you enjoyed before your surgery? -Sarah (BladderCancer.net Team Member)

  • chipper
    1 week ago

    Turned 70 4 days ago and I am very active, I am a service officer for D.A.V., and we help veterans with their claims with the V.A.

  • chipper
    1 week ago

    Sarah,
    I had tumor removed and started hemorrhaging a couple of days later and doctor said I had a choice of chemo and radiation or have my bladder removed, said if I chose to have it removed I could either have a bag or they could construct a new bladder out of my intestines, i asked what would be the drawbacks with a neobladder, he said I was in good shape and only 59 that if all went well I would be fine, so I decided to go with it and I don’t regret it at all. The biggest problem I have is occasional uti’s, but I am at the point when I can tell when one is coming and I take my meds

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