Should Our Active Surveillance Standards After Cystectomy Be Changed?

I have wondered often if we are approaching bladder cancer surveillance in the right way for patients who have had their bladders removed (or otherwise essentially been deemed free of disease).

My first husband lost his life to bladder cancer that metastasized without detection. In his case, he had undergone a partial cystectomy, which is not that common. So, he still had his bladder and had regular cystoscopies as follow up.

The recurring bladder cancer did not appear in the bladder

However, when his cancer returned, it did not appear in his bladder. And even at his death, he did not have any cancer in his bladder. Instead, it was in the lymph system.

For a long time, I thought he was just a very unlucky outlier. And, for the most part, he probably was. But over time, I have heard a number of stories of patients whose bladder cancer returns even when they no longer have their bladders.

Share your story

If you feel that you or someone you care about was diagnosed with bladder cancer “too late” (according to you), I feel your pain and I would encourage you to share your story to encourage others to be vigilant.

It is a fine line between encouraging vigilance and coming across as alarmist or being accused of scaring people. But when I look back and think of the moments at which I could have asked more questions or pressed for more testing, I feel regret.

Making something good out of devastating loss

My husband’s cancer came back metastasized after we thought it was under control as an early-stage cancer. When you lose someone in this way, you try to make some good out of your devastating loss. For me, that became telling my story as a cautionary tale. It felt like a public service to forewarn others. It was all I could do other than be very sad and feel defeated.

We were told it was very unlikely to become life threatening

After the initial early-stage diagnosis and treatment, doctors essentially told us that bladder cancer would continue to be something of a nuisance in our lives that would require ongoing follow-up. But the likelihood of it becoming life-threatening was very, very low, they said. One doctor even used the word “cured” that, looking back, I wish he hadn’t used.

When you receive that kind of good news, I think the natural instinct is to seize upon it. And seize upon it we did. We lived well and tried to put bladder cancer behind us (except for appropriate follow up).

Two years later, a shock

And so, barely two years later when strange symptoms began like leg swelling without any pain, an obvious injury, or a blood clot, even doctors were mystified at an underlying cause.

It was brutally shocking to learn not only that it was the bladder cancer but that it was the bladder cancer metastasized outside of the bladder.

There was no cancer in his bladder

Part of what made it hard to catch during its return is that surveillance focuses on the bladder. Even by the time of his death (11 months after the metastatic diagnosis), my husband still didn’t have any cancer in his bladder.

The cancer had gotten into the lymph system and was in a lymph node in the retroperitoneal region (essentially the back). It was also in the psoas muscle. A cystoscopy was not helpful for finding bladder cancer in these locations.

Should follow-up surveillance focus solely on the bladder?

And so, I have asked the question to myself many times: should we be more expansive in our active surveillance of bladder cancer? I respect that the expert opinion consensus is that it is rare that bladder cancer returns without first presenting itself in the bladder.

But that is little comfort when you are the patient whose bladder cancer returned elsewhere than the bladder. Over the years, I’ve known several patients now who ended up with brain metastasis. But it took years to recognize that because they never received a brain scan. Meanwhile, they went years with “all clears” until neurological symptoms prompted a brain scan.

Perhaps this is rare but when it’s a scenario similar to the one you have lived, it feels anything but rare.