Scanxiety Revisited

There are words universal in meaning in the cancer world. It doesn’t matter if they are spoken by an oncologist or patient. When one person uses them, the other understands. Cancer, treatment, mastectomy, radiation, labs, and scans are all very broad terms, yet they all have a shared understanding between people.

Scanxiety isn’t one of those words. Patients who get scans know this word well. I used it with a treatment nurse back a few months ago and it was unfamiliar to her. I didn’t make too much of it but I began to wonder if this was a term medical professionals didn’t use. Why would they? They are not the ones having scans. But if they don’t understand the word, they also don’t understand how many of us feel.

Scans came up too soon in my life again and I needed my port accessed. My phlebotomist shared with me that she had recently learned about scanxiety. She understood what it meant and how it could affect people. I was pleased someone who was not a patient got it.

I don’t know how many oncologists and treatment nurses are familiar with the term. I’ll do some informal surveys. If there is understanding and empathy around scanxiety, we are more human. We have feelings and emotions. We are not rogue cells, just patients, or subjects.

My scan team has always gotten it. I get the bigger MRI scanner. There’s a washcloth gently covering my eyes so I can’t see how crammed into that tiny space I am. Lavender oil is sprayed on gauze and placed on my chest so it can waft up. Music of my choice is played. It is just like a spa.

Not. But they try.

Scanxiety happened on my very first MRI oh so long ago. A massive dose of claustrophobia was more accurate. The techs could barely get me in the machine. I would have pushed back but my arms were strapped down. The immobility aspect also impacts my claustrophobic feelings. After that, lorazepam became my sometime friend, along with the other provisions with lavender and eye coverings.

Imagining the scanner as a protective cocoon works some of the time. I am safe. For a stretch of time, I am shielded from the rest of the world. It’s a cozy world just for me and no one else. I really don’t have to do anything but lie there and occasionally hold my breath. Do I feel like a butterfly after emerging from my cocoon? No. Maybe I’m one while in the MRI and then turn back into me when I’m rolled out.

Jumping to present day scans, I haven’t felt the scanxiety on the last few. On the last two, I was extremely hopeful for good results. Hope and excitement replaced anxiety. Those scans showed progression. I feel a numbness now about scans. There isn’t worry but there isn’t hope either.

Numbness has its benefits because I’m not feeling. These blasted machines are one more aspect of cancer life that has become routine like office visits and treatments. Yet, it isn’t natural for us not to feel. Being alive means we feel.

One reason why I’ve had scanxiety is due to reactions from the gadolinium based contrast dye that is used in the MRI scans to detect tumors and growth, or regression. Eovist is used for my abdomen MRIs and I’ve never had any problems with it. Multi Hance was used twice for bony pelvis MRIs. It was fine at first. I experienced worsening leg pain and muscular issues about four days afterward both times. I was hospitalized the second time with intense pain. Multi Hance contrast was the only correlation.

A radiologist came in to talk to me at one of my last scans because my story is so atypical. A third contrast agent could be used called Dotarem. The Multi Hance would be preferred for what the scan was looking at today, but they didn’t want to use it. Good news as I wasn’t going to let them use it. Eovist didn’t show these organs well so it wouldn’t do much good to use it. Dotarem was another choice, but I hadn’t had it before and no one knew how I’d react. Scanxiety momentarily returned. Another radiologist was consulted and they recommended Dotarem. I was willing to give it a go. It took 45 minutes for all of this to be decided, but I was pleased that I had a team of people working on this so I stay safe.

I had some leg pain in both legs a couple of days after that wasn’t there before. It could be muscle related, bone pain, or scan related. Eventually, it went away. I would be hesitant to receive Dotarem again.

Revisiting my scanxiety has shown me that people can view the same object very differently. I see the scanner all too emotionally even though I know it’s yielding needed information. I believe my oncologist and radiologist see it as an inanimate object incapable of arousing emotion. It’s a sterile machine in a controlled environment. Therefore the person being placed inside (shoved, crammed, stuffed) is sterile and controlled as well. Results don’t have emotion. Facts are facts and any feelings are nonexistent or unattached.

All this brings me to wonder what causes oncologists anxiety. I would love to find out. Understanding one another better would support better communication. Better communication leads to better patient care.

And if someday patients are offered a massage after a scan to relax and truly make the experience like a spa, I would support that added to my care.

Author: Kristie Konsoer

I've been living well with metastatic breast cancer since 2012. This blog is a place where I can share thoughts and ideas on cancer, how I feel perceptions of cancer must change, and how I am finding a way to live with strength, hope, meaning, resiliency, humor, and hopefully a little wisdom.

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