The Cost of More Surveillance Scanning: Patients' Mental Health

I was in the middle of a clinic visit when one of our nurses knocked on my door.

"I'm sorry to interrupt, but your patient's wife just called and really wants to know what his scan showed." The patient was a man with metastatic lung cancer. The CT had been done the day before to surveil his cancer while on maintenance therapy, though I had yet to communicate the scan results to him.

I finished up my visit and called the patient and his wife. "Good news — your scan looks fine! There's no growth of cancer anywhere. Let's continue with your current therapy."

Every time I deliver a scan result to a patient, I hear the same thing: a sigh. It's either a sigh of relief or an attempt to calm down after a bad scan result.

Either way, it's a painful insight into the anxiety patients feel waiting to see whether their cancer is growing or not. Every hour that I wait before letting them know about a scan result is another hour that most patients can't think about their families, their work, or anything else.

Scanxiety

The term "scanxiety" was coined by Bruce Feiler in TIME in 2011. He described it as the debilitating anxiety patients feel around the time that they get their scans, "the fear of what we might find when we do." The anxiety could also easily apply to cancers that we monitor using laboratory values, such as prostate cancer.

It would be one thing if scanxiety were a necessary evil — something that all patients with cancer needed to get to a cure or long-term disease control. But more scanning doesn't necessarily mean we are giving more time to our patients. In fact, frequent scans may be something that makes us as doctors feel better, at the expense of our patients' mental health.

A 2016 survey conducted by my colleague Joshua Bauml, MD, at the University of Pennsylvania showed that 83% of patients with lung cancer reported scanxiety and that it decreased their quality of life.

Like diabetes or heart failure, cancer is a chronic condition that is often controllable, even in the stage IV setting. And yet, anxiety around A1c tests and echocardiograms hasn't been documented.

Perhaps scans are the only time that patients actually think that they have cancer. Take a patient with stage IV cancer, which is rarely curable. Nevertheless, for many stage IV cancers — particularly in the maintenance therapy setting — patients are able to live normal lives, return to work, and participate in physical activity without much outward evidence that they actually have cancer. "Negative" scans showing that someone's cancer is controlled or shrinking only reinforce this return to normal living for patients.

That might explain why 96% of patients with advanced cancer have a more optimistic outlook about their cancer than their clinicians do and more than half of patients with stage IV cancer believe their cancer is curable.

A Self-inflicted Wound

As oncologists, we usually encourage patients to accept scans as a necessary part of cancer care. I often refer my patients to crowdsourced strategies from support groups about how to manage scan-related anxiety.

Ironically, scans are often a relief mechanism for anxiety: There's no better way to relieve scanxiety than a good scan result. As one colleague told me, "Scanxiety is one of those phenomena where the cause of the disease and the cure are the same thing."

But as oncologists, we need to acknowledge how much of scanxiety is a self-inflicted wound.

Granted, some of our practices have clear guidelines. For example, National Comprehensive Cancer Network guidelines for stage IIIB non–small cell lung cancer recommend chest CT with contrast every 3-6 months for 3 years after treatment, then chest CT every 6 months for the next 2 years, then low-dose CT annually after that.

However, imaging guidelines for other cancers, such as urothelial and prostate cancer, are often based on clinical preference or intuition. I know from talking with colleagues treating prostate cancer, for example, that surveillance of metastatic disease often ranges from prostate-specific antigen testing only to annual imaging. Imaging modalities such as PET are coming into the fold for prostate cancer, yet guidelines have not kept pace. PET has been best studied in biochemical recurrence, but we often now use PET to surveil metastatic disease and occasionally for initial staging — adding an extra scan to patients' lives without clear evidence to do so.

We also know that inappropriate imaging for breast and prostate cancer varies markedly by region in the United States. In other words, scanning is often dependent on who sees a patient and where they are seen.

The Evidence — or Lack Thereof

Even when the frequency of scanning surveillance is specified in guidelines, we know very little about whether aggressive vs lenient durations actually change outcomes. That's reflected in the wide variability of scanning frequency — or whether scans are used at all — in many cancers.

In certain situations, such as surveillance after curative intent therapy for lung cancer, there is evidence. But in most other cancers and settings, we have little evidence that frequent scanning does anything more than cause scanxiety. This is particularly relevant for metastatic disease, in which improving quality of life is as important as or more important than improving survival.

So can we scan less? We don't know, and many patients and physicians aren't interested in knowing. We think scans reassure patients. But in reality, every scan is also a chance for a patient to realize their cancer has come back.

Most recurrences are detected via scans in an asymptomatic state. Fear of a symptomatic recurrence can justify more frequent scans, particularly because developing symptoms is associated with higher mortality in some cancers. But this must be weighed against the costs — both monetary and nonmonetary — of proving that someone's cancer came back 3 months earlier.

The answer to this question may not even be scanning more or less, but instead surveilling cancer in better ways than scanning alone. One randomized trial showed that a web-based symptom monitoring program that prompted scans led to earlier relapse detection, better performance status at relapse, and a 7-month higher median overall survival — all while decreasing the number of scans performed.

Our symptom monitoring technology has only improved since this trial. We can now report symptoms on a more frequent basis using smartphone apps, and wearable technology can often automate symptom and vital sign monitoring.

We still need to get these tools right. But the point remains: Trials such as the one above show that the answer to reducing scanxiety may not be scanning more, but rather monitoring symptoms better.

Despite this, the tide is against de-escalating scans. In much of oncology, more advanced imaging and diagnostic capacity, including circulating tumor assays, emphasize detecting cancers and their recurrence early. Often, detecting "oligometastatic" cancer — one of the least understood and most subjective terms in all of oncology — is used as a justification to scan early and often.

But more oncologists are realizing that evidence for scans is lacking in such areas as brain tumor and meningioma surveillance. We need to realize that more careful surveillance has a huge impact on patients' return to a normal life.

We have made enormous progress in de-escalating therapy, managing side effects of treatment, and helping patients as survivors when treatment is complete. Many of these patients are reminded that they have cancer only when they are waiting for their scan results. Perhaps we as oncologists need not remind them so often.

Ravi B. Parikh, MD, MPP, is a medical oncologist and faculty member at the University of Pennsylvania and the Philadelphia VA Medical Center, an adjunct fellow at the Leonard Davis Institute of Health Economics, and senior clinical advisor at the Coalition to Transform Advanced Care (C-TAC). His research and writing focus on policy and innovation in cancer care, with specific interests in advanced illness and predictive analytics.

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