Scanxiety and Terror Management Theory

Scanxiety and Terror Management Theory

James Randolph Hillard, MD

Aug 01, 2016

Dictionary Definition:

Scanxiety (n) “scan zi et ee”:  Anxiety and worry that accompanies the period of time before undergoing or receiving the results of a medical examination (such as MRI or CT scan). [Author's note: This word does not yet appear in any legitimate dictionaries, so I have jacked this definition from urbandictionary.com, where I normally go only to look up slanglish terms like waifu and weeaboo.]

Board Examination-Type Question:

Which of the following is true about scanxiety?

1.    It is rational.

2.    It is irrational

3.    It is nearly universal among patients with cancer.

4.    It attenuates over time

 

A.    Choices 1, 2, and 3 are correct.

B.    Choices 1 and 3 are correct.

C.    Choices 2 and 4 are correct.

D.    Only choice 4 is correct.

E.     All choices are correct.

The correct answer is A.

Rationale:

Scanxiety is rational because the results of each scan can, literally, be a matter of life or death. It is irrational because patients feel it regardless of the actual probability of bad results. It really is nearly universal among patients with cancer who are getting scanned as part of their disease surveillance. It does not attenuate over time. (These answers are based on my personal experiences and on those experiences that lots of other cancer survivors have shared with me.)

Actual Blog Post:

My next scan (a MUGA scan to make sure that my trastuzumab is not damaging my heart) is next week, which, I suppose, is why I have chosen this topic for this month. I have had a lot of scans since my stage IV gastric cancer diagnosis 5 years ago. Initially I was getting scanned every 3 months, then every 6 months, and now just once a year. My last MUGA scan showed that my left ventricular ejection fraction (LVEF) was still normal limits, but had declined 10% since I had started trastuzumab infusions. If my LVEF has declined further, I will need to contemplate whether or not to stop trastuzumab, which, I am pretty sure, is what has been keeping me alive. I am very anxious. I am also feeling very tired and sort of syncopal, which I hope is all in my head.

Regardless of the results of my MUGA scan, I will be very anxious again in the fall when I have my next CT scan, although my post-surgery CTs have always shown no evidence of disease (NED, the three most wonderful letters in the English language) and I am not having any new symptoms.

Of course, sometime in the next couple months I will start getting new symptoms, particularly poorly defined abdominal pains. I will tell myself that those are all in my head too, but I will not really believe myself. That is to say that the frightened, irrational part of me is not really amenable to logic.

What has been most surprising to me is that my scanxiety has not attenuated over time. It seems that I should be exponentially less anxious each time, since the longer I go without a recurrence, the less likely I am to get a recurrence.

Which brings us to “Terror Management Theory” (TMT), which I know sounds like something I would make up, but you can look it up on Wikipedia. TMT has nothing to do with the TSA. It is a social psychology concept based on the fact that humans innately want to live, but know that sooner or later they are going to die. The attempt to resolve this opposition leads to terror, and that terror has a lot to do with the development of human culture. TMT uses culture to refer to the way that a specific group of people generally live their lives, including their behavior, their beliefs, their religions, and their attitudes. If you would like to move your level of understanding of TMT up from Wikipedia level, here is a link to the subject on Psychology Today.

The theory owes a lot to Ernest Becker’s Pulitzer Prize-winning book The Denial of Death, published in 1973, the year after his diagnosis of colon cancer and the year before his death from that disease. Becker argues that in order to escape the fear of death, each person constructs an “immortality project,” which allows the person to literally (as in religion) or symbolically (through influence on others or through membership in a larger group) continue to live after death.

My immortality project has included becoming spiritual for the first time in my life, joining the cancer survivor culture of “never give up” (although I am also a member of the hospice culture, which has a different message), spending as much time as possible with my granddaughter, teaching medical students, and writing papers and blog posts, which I hope will live forever through PubMed and the Wayback Machine.

I would have gotten the question "Are you going to die?" correct on a Board Examination. However, I spend most of my time between scans writing essay question answers that allow me to avoid the horrifying truth.

In the face of a new scan, though, my immortality project crumbles. All of the terror that I have been able to avoid suddenly comes back in full force.

So, what can you do to help your patients deal with scanxiety? 

Well, you can get their scans scheduled as quickly as possible and get the results back to them as quickly as possible. Of course, this does not make a major difference in the course of their illness, but it does make a major difference in the course of their living. You can also bring up scanxiety with your patients when you order a scan and let patients know that it is normal and unavoidable. Perhaps most important, you can emphasize that you will be there to help them understand the results and the implications of the results and to help them make plans based on those results.

You can also join my efforts to have “scanxiety” included in the Oxford English Dictionary.  When I entered the word in the OED website, here is what I got:

Come on, people, “scanxiety” deserves to be in the dictionary at least as much as “skankiest”!

Disclaimer: 

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Comments

Kovilo Bhikkhu

Aug, 04 2016 10:14 AM

Another very good article. “Scanxiety” definitely deserves to be a word … but what I want to know is, is it possible to remove a word from the dictionary? Even in an online English-Chinese dictionary, “skankiest” doesn’t deserve to be a word. What kind of message are we sending to the billions?

At any rate, I got the Board Examination Question at the beginning of the article wrong … but, (though I’m not an expert) I think I am right. I answered “D - All choices are correct.” But, I would add a fifth choice in the original set of options of what is true about scanxiety: “It doesn’t attenuate with time.” With that as a fifth option, I would again choose choice “D - All choices are correct.” And, I would, again, think I was correct.

Please read what follows as a rational (theoretical) answer from someone who doesn’t have cancer or scanxiety (and thus doesn’t know how that feels) but feels acknowledging the mind’s flexibility in this regard could be useful.

The question is: Does scanxiety attenuate over time? It seems it would depend on what one does with it. If one sees it as unattenuat-able, then one is not likely to put in the causes for its attenuation (one of which would be the belief that: it, like everything else, is conditioned and exists only as long as its causes persist).

If, on the other hand, one believes that it could possibly attenuate over time, then one is more likely to put in the causes for its attenuation and to try to remove the causes for its continuance. What are the causes for the attenuation of the whole experience of scanxiety? There are four:

1) Preventing un-arisen scanxiety from arising. Even in the grips of scanxiety, there must be at least a few minutes during the day when that scanxiety is not present. These are the moments which one can sew seeds of “non-scanxiety” (now that should be a real word in the OED!) like giving attention to that which is calming in this “not-yet-scanxious” phase of things. This will differ for everyone but could be a cute dog or a meditation word or a prayer.

2) Overcoming arisen scanxiety and “scanxiousness.” This can be more difficult. Fear, as is noted, is not rational so one can’t reason with it. Perhaps now would be the time for a bubble bath – i.e. a time for not stoking the flames. This is a time for equanimity. Easy to say, hard to do … but possible.

3) Encouraging un-arisen “non-scanxiety” to arise. What is it like to not be scanxious? It feels like the heart when it is being generous (sharing) or when one is being friendly or loving or other things that there are Care Bears named after (excluding Grumpy Bear … as one might guess, being grumpy or “a little I-Don’t-Care Bear” are not that helpful).

4) Pumping up and stoking arisen “non-scanxiety” that has already arisen. This is basically watering and feeding all those Care Bears in our hearts.

So, does scanxiety attenuate over time? If one sees it (and this is doable and could even be easy) as the essential, unchanging aspect of one’s character (which would be weird considering that every human ever never had an ounce of scanxiety before being scheduled their first scan), then the answer is: No. But if one sees it (and this too is possible … but might take some mental maneuvering) as a changing phenomenon that arises and passes away based on the food we feed our Care Bears (and their more mature cousins the Skillful Lil'Bulls: Mindfulness Lil'Bull, Compassion Lil'Bull, Equanimty Lil'Bull, etc.) then the answer is: Yes.

I don’t know how the Board’s are graded. Would this essay response pass? Or would it just annoy the graders?

“Care Bear Stareeee!!!” "Skillful Lil'Bull Pulll!!!"

Wendy Schlessel Harpham, MD

Aug, 06 2016 11:28 AM

Thank you for bringing attention to this common challenge for survivors and to some ways clinicians can help patients minimize their distress. As a long-term survivor, I disagree with the suggestion that it never lessens over time.

While scanxiety doesn't ever disappear (after all, patients would not be having the scan if there were no possibility to reveal recurrence or progression), I believe most patients can learns ways to lessen scanxiety. As I share in "Minimizing Scanxiety" (Oncology Times), "I found relief in a triad of expectations: expect any results; expect the results to help; expect to accept and deal with whatever results I get. In other words, accept the uncertainty and focus on the benefit of the test results. That led me to an insight about hope that helped my waiting: More than I hoped for good news, I hoped for accurate news—however long that took." I also found relief in consciously distracting myself and keeping myself busy, channeling the energy of scanxiety into productive and/or fun activity. 

It took a lot of time, effort and practice, but now when I'm scheduled for routine scans I need to leave reminder notes taped to my mirror and fridge to remind me to go.     With hope, Wendy (www.wendyharpham.com  

James Randolph Hillard, MD

Aug, 09 2016 5:18 PM

Thank you for your comments, Wendy.  I am happy that you have found scanxiety to lessen over time!  You have been getting scans longer than I have;  so you give me hope that my scanxiety will someday lessen.  Your scanxiety avoidance suggestions seem like very good ones.  I will try them.  Distraction does work for me, but so far, only temporarily.  I think about obsessions not as being things that you think about every minute, but instead things your mind returns to whenever you are not actively focusing on something else.

Kovilo Bhikkhu, I am trying to use your suggestions, too;  but I clearly need more "practice"!


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