Anxiety About Scans and Other Cancer Tests

For those of us who live in this world — the world of cancer — we have all heard of the term “scanxiety.” In my mind, it means the fear of the unknown when it comes to getting the results of your scans. Are my tumors spreading? Are they growing? When you don’t know, but are about to find out from a scan, you develop scanxiety.

Last week I had scans. I am not usually prone to scanxiety, but since I know I have another major surgery in the near future, my spidey senses do tend to tingle a little bit when I get my scans.

Luckily, I am stable, so there is no need to push me into surgery today. My next scans are in another three months so I can rest my scanxiety until then.

But I am still on my treatment which is a once-monthly shot (Somatuline [lanreotide] for those familiar with neuroendocrine tumors). I had my last shot the same day as my scans, almost two weeks ago.

The side effects of the shot are not consistent. I have had shots with no side effects, shots that resulted in bad diarrhea, fatigue issues, issues the day of the shot, issues two weeks later, etc. Finding a pattern is tough because I don’t really have one.

This time, I have had way worse fatigue for the past two weeks. Not debilitating, but I am a person with a lot of energy and I have definitely slowed down. If my energy level is usually a seven (or pretty close), lately it’s been a four. I hate fatigue as a symptom because it makes me feel like I am sick and stops me from doing some of the things that I wish I could do.

Here comes my big epiphany. The scans are only one small part of my diagnostics, but the one test that actually has an anxiety term associated with it. Why?

I know enough to be dangerous, so I pushed my doctor to do a complete blood cell test, a comprehensive metabolic panel and an iron panel. These are all blood tests to see if my platelets, iron, hemoglobin, etc. are at lower numbers and if that is what is causing my fatigue. There is no such thing (to my knowledge) as “blood testiety,” but why not?

Scans can just tell me size and growth. That’s only one part of the picture, and I would argue, not the most important part (that would be how I feel, but that’s just my opinion). They don’t tell me how I feel, how my body is performing, how my blood is doing, why my symptoms are what they are, etc. Scans aren’t even close to 100% accurate, as we all know.

So why is “scanxiety” a thing, but there are no “-ietys” attached to other tests? Is it because it’s a more expensive test? Because it needs more scheduling? Because a tech does it?

I can’t figure out (and I don’t have an answer)why scans are considered the biggest test we get. I used to consider them critical too, until I realized this week that a scan can’t answer why my fatigue has gotten worse.

I had a great conversation last night about this topic with my wife. She raised some really good points. For example, in addition to being an “event,” a scan offers something tangible: images that you can see and measure and can drive discussion. Scans make things real. You can see parts (or all) of the human body and see how the tumors fit into the overall structure. It almost tells a more visible and understandable story, which makes it more of a thing.

A blood test, or other tests, tend to offer data points. Data points are numbers on a spreadsheet that don’t have context, the way a scan does. Unless you are analytical, the average person won’t know what to do with data points, but they will understand photos. Maybe a good metaphor is having a baby. Ultrasound photos are a big thing. They are scheduled, show images, show context, etc. As opposed to the blood tests which no one talks about. I am not sure if that’s a perfect metaphor, but it helped me understand!

So that’s what I am thinking about. I am putting my scans in perspective, advocating more for myself to get the tests that I know I need, lessening (or trying to) my scanxiety and getting a better overall understanding of how to know how I am doing.

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