Schrodinger's CAT: 'Scanxiety' Makes You Feel Both Well and Sick

This transcript has been edited for clarity.

This is Mark Lewis for Medscape. I am a medical oncologist and director of gastrointestinal oncology at Intermountain Healthcare in Utah, and I am a patient myself with a neuroendocrine tumor syndrome. Today I would like to talk about the phenomenon of "scanxiety."

I don't usually like portmanteau phrases that combine words, but in this case I think it nicely captures the apprehension that occurs when a patient like myself undergoes scans. This recently happened to me, and I realized that it's a little bit—if you'll excuse the pun—like Schrödinger's CAT scan.

As you enter the machine, you are two things at once: You are both well and you are sick. And while you are inside the device you are wondering what the pictures are going to show. Are they going to show progression or are they going to show response? In fact, that is a false binary because sometimes in oncology they show stability, and we have to learn to be okay with that, too.

My point is that when you go through the testing, you think about yourself in a different way than you might otherwise. It's sort of a punctuated equilibrium where all of a sudden you realize the significance of your care. You are always somewhat aware of your own mortality. These episodes really heighten your awareness that your own life might hang in the balance.

The other side of this is how we relay these results to our patients. This is increasingly an issue in the era of electronic data portals, where patients might have access to their results before they have had the chance to sit down and review them with their doctor. I have felt the temptation to do just that. I wanted to open my patient portal and read my scan result before I had the chance to discuss it in person with my physician.

Without sounding arrogant, I think where I have a distinct advantage is through my medical training, both formal schooling and then real-world practice. I've learned the vocabulary. My radiology report was really quite sophisticated in the level of information—you might even say jargon—that was being relayed. First and foremost, most of the sizes in radiology reports are relayed in centimeters or millimeters. I think most Americans are quite comfortable with the imperial system of measurement but not necessarily the metric system, so even that requires a level of interpretation. That might be as unfamiliar to us as a temperature reported in Celsius rather than Fahrenheit. And then there are so many synonyms for cancer. In fact, some of these words are not really synonyms at all. "Mass" can be entirely benign. "Lesion" is also a very common word in a radiology report. These may not be malignant and they may not signify growth, but I've seen patients who read their reports ahead of time be very concerned about these findings.

I often tell patients also that the best thing they can be in a radiology report is "unremarkable." It's very rare to see the word "normal." I think patients look for that. Often the radiologist is doing pattern recognition to see if the patient has deviated from what is accepted to be a normal anatomy, and that is where the word "unremarkable" comes from. I've talked before about the data stream that the modern oncologist has to absorb: the literature and the constantly evolving research and progress that we're making.

A separate data stream is the information that comes from your patient. We get a lot of qualitative data when we sit down with our patients. The most rewarding part of the whole experience is the interview and the exam—the physical presence you have with someone under your care. But we really rely on a lot of quantitative data too, and that requires labs and scans and sometimes pathology to make the cancer diagnosis, and then to track the disease over time. It's rare that we get all of these results in real time, nor frankly would we want to because we want to be thoughtful about this information-gathering and its processing.

Behind the scenes we often discuss these results with our colleagues, either informally in ad hoc meetings or formally in tumor boards or multidisciplinary discussions. That means there ought to be a gap between when the results are gathered and when they are discussed with the patient. In that gap, we're still figuring out how to calibrate the immediacy of information delivery while making sure it's properly put in context by the oncologist, so that the patient really understands what those numbers and measurements mean for them.

As we've said before, only two endpoints really truly matter: a patient's longevity and their quality of life while they are alive. It's very difficult for a single scan or a single lab, especially taken out of context, to tell the patient that. I firmly believe that information is still best relayed in a face-to-face encounter between the oncologist and the patient.

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