Researchers compare cancer screening anxiety to PTSD

Last month, I reported on a new study that women diagnosed with the “fake” breast cancer — called ductal carcinoma in situ or DCIS — actually lived longer than women not diagnosed with this “cancer.”

These fake diagnoses ultimately stem from overusing mammograms, which other studies show do not even prevent breast cancer deaths in women. Researchers concluded that women who dutifully get mammograms are more concerned about their health and practice other healthy behaviors. Thus, they have lower death rates as a result. Their misdiagnosis of breast cancer is just a “side effect” of following medical and health recommendations, some of which are actually beneficial.

But, ironically, while women who get cancer screenings are healthier (for reasons unrelated to the screening itself), they commonly suffer from another problem: cancer “scanxiety.”

Healthy men and women often experience cancer scan anxiety leading up to and following cancer screenings, such as PSA tests and mammography. This very real anxiety negatively affects quality of life, undermines plans for healthcare, and can lead to unnecessary treatments.

In addition, cancer survivors experience “scanxiety,” even after they finish successful treatment and show no evidence of disease. They fear follow-up scans will show their cancer has returned, and the dreaded implications.

Metastatic cancer patients also fear scans will reveal that treatments aren’t working or that their disease has progressed. A “positive” finding for metastatic patients often means they can no longer be treated and will, in fact, probably die from cancer.

As common as these experiences are, cancer scan anxiety has not been well studied.

But one group of doctors from my alma mater is trying to change that fact…

U Penn first to study cancer scan anxiety

According to Joshua Baumi, M.D., a medical oncologist at the University of Pennsylvania Abramson Cancer Center, “scanxiety” caught his attention during a recent program called “Focus on Lung Cancer.”

U Penn doctors read from an essay by a cancer survivor who wrote, “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 ‘cancer land;’ land on black, we have a few more months of freedom.”

That program prompted him to organize a cross-sectional survey of 103 patients with metastatic/recurrent lung cancer. They looked for risk factors for developing scan anxiety and measured the impact on quality of life.

Overall, 83 percent of patients reported some scan-associated distress that impaired quality of life. The distress was not associated with time since diagnosis, or whether a recent scan was done. This finding suggests that in cancer survivors, scan distress is always present and doesn’t go away over time, even after many “negative” scans.

A psychiatrist at Memorial Sloan Kettering Cancer Center in New York ominously calls the anxiety experienced prior to a scan “pre-scan psychosis” or PSP. It can induce responses similar to post-traumatic stress disorder (PTSD). A mental health evaluation called “Impact of Event Scale,” originally developed for PTSD, showed fear of cancer scans on a scale with cancer diagnosis, trauma, and wartime experience.

Other studies, similar to the ones at Penn and Sloane Kettering, associate “inconclusive” scans — which require further testing and waiting — with the greatest amount of distress.

Anxiety impacts cancer care

Because of their anxiety, some patients simply stop getting scans. The terror of the whole process simply overwhelms them, so they become paralyzed.

Other patients experience a condition known as dissociation. In other words, they may displace their “nameless” worries about getting a scan and start talking about other symptoms — which can lead to overtreatment.

All this may remind you of the old adage “ignorance is bliss.”

Sometimes, having too much information is counter-productive, particularly when there is little or nothing you can do about it.

When I was first in training during the mid-1970s, oncologists insisted that doctors had to stop the former, “unethical” practice of not informing cancer patients, or family, of their diagnosis, and sparing them the anxiety and worry (especially when there was nothing the doctors could do).

The over-confident, new oncologists pushed out this old-fashioned approach. They said old-fashioned doctors were “unethical” for not fully informing patients and family. They also thought the elusive “cure for cancer” was always just around the corner. And they felt the newly declared “War on Cancer” would yield a victory soon.

But perhaps there was something to the older doctors’ old-fashioned approach after all?

All these years later, we still have no victory, too many unnecessary scans, and too many false-positives. No wonder people are worried.

The good news is, you can help alleviate any cancer-related anxiety you might be experiencing by learning about the real answers for cancer that have been hiding in plain sight all along.

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  1. “Cancer ‘Scanxiety’ Is a Real (Terrifying) Thing,” Medscape ( 2/10/2017