Cancer 'Scanxiety' Is a Real (Terrifying) Thing
It's a not part of the medical lexicon (at least not yet), but "scanxiety" is a word that cancer care providers would do well to know.
That's because it negatively affects patients' quality of life, may undermine follow-up care plans, and can even lead to unnecessary treatment, according to interviews with physicians and a review of the sparse medical literature on the subject.
Scanxiety is cancer patients' fear and worry associated with imaging, both before and after a test (before the results are revealed).
In early-stage patients who are successfully treated and have no evidence of disease, the underlying fear is about cancer returning and the dreaded implications.
In metastatic patients, the fear is based in scans' potentially revealing a lack of treatment effectiveness or disease progression.
Thus, at either stage of disease, scan results may portend death.
"A positive result means you can no longer be cured and will probably die from breast cancer," commented Elizabeth O'Riordan, MD, an oncoplastic breast surgeon in Elmswell, United Kingdom, about scans among patients with early-stage cancer in her specialty.
Dr O'Riordan knows of what she speaks. She was diagnosed with stage III breast cancer at age 40 in 2015 and has since had post-treatment symptoms that have necessitated a scan, which she says provoked scanxiety and deeply personalized for her the high stakes of scans.
"Scans bring us up against an honest-to-goodness existential threat," said Randy Hillard, MD, a psychiatrist at Michigan State University in East Lansing, who was diagnosed with stage IV stomach cancer in 2010 and has written about his own scanxiety.
That existential threat may explain why scanxiety does not attenuate over time — even after many scans — among cancer survivors, which is one of the main findings from the one-and-only academic study that has explicitly addressed the phenomenon and was published just last year (Lung Cancer. 2016;100:110-113).
Every oncology clinician has seen scanxiety because it is very common in patients with cancer, said the lead author of that novel study, Joshua Bauml, MD, a medical oncologist at the University of Pennsylvania in Philadelphia.
"It's impossible to participate in cancer care and not see it," he told Medscape Medical News.
However, Dr Bauml was not deeply impressed by scanxiety until somewhat recently — the fall of 2015.
That's when he attended Focus on Lung Cancer, an annual community education series for patients with lung cancer and their loved ones at Penn's Abramson Cancer Center.
Dr Bauml's colleague, Anil Vachani, MD, a pulmonologist, stood in front of the gathering and read aloud the entirety of a 770-word essay titled "Scanxiety," which was published in Time magazine in 2011 by US writer and cancer survivor, Bruce Feiler.
A New York Times best-selling novelist and nonfiction author, Feiler wrote that an impending scan is "My regular date with my digital destiny, in which a few seconds of X-rays will show whether the handful of nodules that have been in my lungs since I was diagnosed with bone cancer three years ago have grown larger."
He continued: "Scans are like revolving doors, emotional roulette wheels that spin us around for a few days and spit us out the other side. Land on red, we're in for another trip to Cancerland; land on black, we have a few more months of freedom."
At his doctor's office, Feiler receives good news — the scan shows no change in the lung metastases; on the way out, he stops by the front desk to schedule his next appointment. "The calendar starts again," he concludes the essay.
At Penn, the audience was gripped by the reading, said Dr Bauml.
"You could have cut the tension in the room with a knife," he said.
"It was palpable — this was a real issue," Dr Bauml further commented about that day. He immediately decided to review the scholarly literature on scanxiety. Finding little, he began the process of undertaking a study among patients with lung cancer, one of the most scan-intensive malignancies.
Surgeon Dr O'Riordan echoed Dr Bauml's revelation. "Scanxiety completely makes sense and is a real thing," she told Medscape Medical News.
But clinicians may not get it, she suggested.
"Until you have had cancer, you cannot possibly understand what goes through the mind of a patient waiting for a scan. Not even my husband, who is a surgeon himself, can completely understand," she commented.
Furthermore, Dr O'Riordan herself didn't get it, even once she became a breast cancer patient.
Then she had a tender spot on the top of her scalp, together with a feeling of fullness below the collarbone, where her original cancer had extended. Her doctor recommended a scan. "I didn't understand it. Until it happened to me," she wrote about scanxiety on her blog last month.
Clinicians may not fully grasp the seriousness of scanxiety for a couple of reasons, said psychiatrist Dr Hillard.
First, patients, even when they bring up the topic, tend to downplay it. "We probably tend to share it with our doctors in a minimized way" because of cancer patient culture of "toughness," he said. Second, oncology is full of life-and-death matters; scanxiety just doesn't rate highly, he opined.
Dr Hillard said that the word "scanxiety" itself may diminish its impact among clinicians. "It's sort of a jocular word," he said in an interview with Medscape Medical News.
Author Feiler said that one of his doctors, Jimmie Holland, MD, a now-retired psychiatrist at Memorial Sloan Kettering Cancer Center in New York City, used a more ominous term for scanxiety: "prescan psychosis," or PSP. But a PubMed search reveals that the phrase never took off or gained use.
Nevertheless, scanxiety can induce responses akin to post-traumatic stress disorder (PTSD), said Dr Hillard.
In fact, the measurement tool used in Dr Bauml's study of scanxiety, the Impact of Event Scale, was developed for PTSD. It's a patient-reported outcome measure that ascertains subjective experience in an objective fashion and has been validated in many settings and applied to war experience, trauma, and cancer diagnoses. "I view the scan as a traumatic event," he said.
Practical Issues for Clinicians
In the scanxiety study, which was a cross-sectional survey of 103 patients with recurrent/metastatic non-small cell lung cancer at his center, the investigators sought to characterize risk factors for scan-associated distress among patients and measure the impact of scans on quality of life using another validated scale.
The risk factors proved elusive, but the authors found that 83% reported some scan-associated distress. Scan-associated distress was also associated with impaired quality of life (P = .004).
Furthermore, scan-associated distress severity was not associated with time since diagnosis or whether a recent scan was discussed at an office visit, "which implies scan-associated distress may be a persistent problem," the authors write.
There are a few other reports on scans and distress in patients with cancer, although none chose to use the term "scanxiety."
However, notably, other studies have found that scans with indeterminate results that required further testing and waiting a long time for results were associated with the greatest amount of distress, write Dr Bauml and colleagues.
Scanxiety can also negatively affect a patient's cancer care.
"One of the major reasons that cancer treatments don’t work is that people don’t follow treatment and surveillance plans," said Dr Hillard.
"I know of people who have quit getting scans," he said, explaining that the terror of the process overwhelmed them. "So it's worth talking about scanxiety with patients because of its impact on treatment and disease course."
Dr Hillard is active in the 3600-member Facebook group, The Stomach Cancer Warriors and Caregiver Family, where he has multiple personal connections.
"I joined the group when I came down with scanxiety for the first time when I was going back to get my first scan [after treatment] and I was absolutely certain I was relapsing," he wrote last year.
Dr Hillard's story of surviving 6 years with metastatic stomach cancer is unusual. In fact, after his diagnosis, he was so convinced of his impending death that he contacted an assisted-suicide organization in Switzerland.
In the United States, the 5-year survival rate for stomach cancer is about 5%. But for metastatic disease, that rate has been "close to zero," he explained. However, with the approval of trastuzumab (Herceptin, Genentech) for metastatic stomach cancer in 2010, the prognosis has improved. "I am pretty sure that it is keeping me alive," he said about the human epidermal growth factor receptor-2–targeted monoclonal antibody, which is best known for its original use in breast cancer.
Dr Hillard has had no evidence of disease on every scan since his surgery in 2011. Initially, he was scanned every 3 months, then every 6 months, and now just once a year.
But he still gets scanxiety every time, even though he knows that the longer he has no evidence of disease, the more likely he is cured.
Dr Hillard also does not have any new symptoms — except in the weeks before a scan, when he will invariably get poorly defined abdominal pain, he said.
He also warned that scanxiety can cause the condition known as dissociation. "If your doctor does ask you about your feelings before a scan, you may start talking about other symptoms — the ones that do have a name. And if you're not careful, you end up getting overtreated," he stated.
Dr Hillard advises that clinicians can help patients with scanxiety by getting scans scheduled — and results returned — as quickly as possible. He also encouraged discussion of scanxiety when ordering a scan and describing it as normal and unavoidable.
Dr Hillard would like to see scanxiety fully enter the medical literature. But in the meantime, he has submitted the word to the Oxford English Dictionary for inclusion in the authoritative tome.
The submission form requires the use of the word in a sentence. He selected one from Feiler's Time essay.
Feiler is credited with coining the word by Dr Bauml and other clinicians, including Laura Lieberman, MD, a radiologist at Memorial Sloan Kettering, who did so in an online presentation.
But in an email to Medscape Medical News, Feiler said whimsically: "I do not believe I coined the word scanxiety. I can’t be sure, but I’m guessing I heard it in the ether."
If you don't have access to the ether, visit Twitter and search #scanxiety. There are dozens of entries every month from patients with cancer. Twitter was where Dr O'Riordan first encountered the term. But she has no intention of using it in her medical practice. "I have never used it as a doctor when talking to my patients, and would never use it when I go back to work, as I want to promote a positive message," she said.
However, the term is catching on with US cancer centers.
A Google search revealed that Memorial Sloan Kettering and Roswell Park Cancer Institute in Buffalo, New York, have webpages devoted to the topic, and Dana-Farber Cancer Institute in Boston, Massachusetts, has a podcast on the subject.
The Department of Radiology at the University of California, San Francisco, has a patient-friendly pediatric imaging suite painted with whales, sea creatures, plants, and other life on the sea floor that the department's website says "eases 'scanxiety'" in kids.
Follow Medscape senior journalist Nick Mulcahy on Twitter: @MulcahyNick
Follow Medscape Oncology on Twitter: @MedscapeOnc