Editor’s Note: This is the second of two patient perspectives on surveillance frequency and “scanxiety.” If you missed the first, you can find it here.
“Scanxiety” is the term lung cancer patients use when referring to increased stress, worry and anxiety as the time for their next CT scan approaches. Although scanxiety intensity varies by individuals and circumstances, it is a common phenomenon experienced by many lung cancer patients.
Throughout my years as a patient advocate working with several lung cancer patient groups, I have encouraged and supported many patients dealing with scanxiety. For some, these disturbing feelings last for days or weeks prior to a scan. For others the anxiety does not begin until after their scans. The scanxiety usually continues until the patient knows their results.
As a long-term, early-stage lung cancer survivor, naturally, I have experienced scanxiety firsthand. It has been more than 17 years since my stage 1B lung cancer diagnosis, at which time I had my right upper and middle lobes removed, followed by adjuvant chemotherapy.
My scanxiety was the most intense the first few years after my diagnosis. I don’t get scanxiety as often or as intensely now. But even after all these years, it has never completely gone away. The longer the time between my scans—like a smoldering ember—the more my scanxiety flares up. I begin to wonder if every little ache and pain may be the result of a cancer recurrence.
When I reached my 10-year “cancerversary,” my oncologist suggested potentially terminating annual CT scans.
“Are you kidding? I would peek every day if I could,” I said, only half-joking.
He chuckled, but honored my wishes to continue my annual CT scans.
When researchers and clinicians hear tales of scanxiety and read studies such as a recent one in the Journal of the National Cancer Institute from Heiden et al, which concluded that high-frequency surveillance does not improve outcomes in surgically treated stage I NSCLC,1 it may be tempting to assume that in the absence of a proven overall survival benefit, surveillance scans should be performed less frequently to avoid the harms of scanxiety.
We must resist the urge to draw such a conclusion.
Precision medicine, also known as personalized medicine, is, well—personal. Personalized medicine is not merely matching a patient’s biomarker with the appropriate targeted therapy. When my oncologist initiated a discussion about the frequency of my scans, he listened to my concerns. He understood my personal preference for scanning. Personalized medicine can be as simple as that.
We hear a lot about shared decision-making, often in reference to screening prior to a lung cancer diagnosis. The process of shared decision-making involves discussions between the patient and provider, weighing the risks and benefits, as well as the patient’s preferences. Why, after someone has a cancer diagnosis, would we stop considering patient preferences?
“Determining the most appropriate frequency of scans for recurrence monitoring or treatment response is a perfect example of precision medicine centering on the patient and his or her personal preferences.”
—Dusty Donaldson, Executive Director
Dusty Joy Foundation (LiveLung)
The decision to scan—or not—impacts many areas of a patient’s life. There are many nuanced factors to consider beyond objective measurable outcomes. In a twinkling, someone’s fearful, uncertain future could be transformed by a good scan report. Conversely, a scan showing cancer progression provides important guidance to patients who may be weighing life changes, such as accepting a new job or relocating away from family.
Indeed, receiving a lung cancer diagnosis is itself a significant life change that impacts virtually every area of a person’s life. Depending on the individual, some may completely forego scans and treatment. Others may want the most current information available to help guide them on their journey.
Determining the most appropriate frequency of scans for recurrence monitoring or treatment response is a perfect example of precision medicine centering on the patient and his or her personal preferences.
Does Reducing Scans Reduce Scanxiety?
Interestingly, Heiden et al presumed that extending the time intervals between scans would decrease patients’ scanxiety. The authors go so far as to conclude “future lung cancer treatment guidelines should consider less frequent surveillance imaging in patients with stage I disease.”
Perhaps, for some patients, less frequent scanning may reduce their anxiety because cancer may not be top of mind until their scan time approaches. However, extending the time interval between scans may very well increase scanxiety for other patients.
Patients highly value quality of life. But there is an ever-changing balance between quality and quantity.
The very day I found out I had lung cancer I made a major change. I was working fulltime and in a grueling fast-track MBA program. I dropped that MBA program like a hot potato. With the understanding that my life might be cut short, my goals shifted dramatically.
The knowledge of having a recurrence is just as important as the knowledge of not having a recurrence. And the peace that comes from knowing one way or the other replaces the uncertainty about the future.
Delaying surveillance scans is not automatically the solution to scanxiety. There is no scan schedule that will fit all patients. If there is room for patient preference—and I believe there should be—that should be enough. Not only should clinicians keep patient preference in mind when scheduling scans, investigators should keep the patients’ voice active in future research on this topic.
Indeed, I would like to see further studies of scanxiety levels based on scan frequencies. I also would like to see a scan frequency study more accurately reflecting the general population.
An overwhelming majority—96.3 percent—of patients in the Heiden et al study were male. This, of course, does not reflect the general population with a diagnosis of lung cancer. The patients were also war veterans, who are known to have more exposure to carcinogens, such as Agent Orange, asbestos, burn pits, diesel fuel, and more, compared to the general population.
The data from the study came from a period before veterans were allowed to use private care facilities, when long wait times were common. In this study, surgical delays were experienced by 29.6 percent (1,825) of the patients. Another study looking at whether a delay in surgery contributed to recurrence would be beneficial.
Providers could better serve their patients by broadening their perspective when considering scan frequencies. Not all patients respond the same way to anti-cancer therapy. Likewise, not all patients will benefit by decreasing the frequency of scans.
- 1. Heiden BT, Eaton DB, Chang SH, et al. Association between imaging surveillance frequency and outcomes following surgical treatment of early-stage lung cancer [published online ahead of print, 2022 Nov 29]. J Natl Cancer Inst. 2022;djac208. doi:10.1093/jnci/djac208