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.
How long did you wait before telling others about your diagnosis?