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8 Years Later, I'm Still Coping With Scanxiety

March 31st, 2016 |
Survivorship, Emotional Support

by michelemv | Survivor: Thyroid Cancer    Connect


You would think that after years of repeating scans and tests that the experience gets easier. Unfortunately, that's far from true for some current fighters and long time survivors struggling with "scanxiety". Read more below.

One day I was a 29-year-old newlywed, just back from my honeymoon. The next I was still that 29-year-old newlywed — with a lump in my neck that I’d found while putting on a necklace. Two months later, I got the diagnosis: papillary thyroid cancer.

I had my thyroid removed and radioactive iodine treatment. Two years later, the cancer came back. With the new tumor on my vocal cord, my doctors recommended more radioactive iodine over a second surgery.

That was more than five years ago. My acute treatment is behind me, but a lifetime of blood work and neck ultrasounds to monitor for any further recurrence lie ahead.

After eight years of these scans, I know the drill:

After the interminable wait in the radiology department waiting room, I’m led to a small room with a narrow bed next to an ultrasound machine. I dutifully wear a v-neck sweater so I wouldn’t have to change into a gown. After removing my necklace and earrings, I lay down on the bed, pillow positioned under my shoulders to maximize discomfort and neck accessibility. Unlike the (sometimes) happier sonogram rooms of obstetricians’ offices, this room features no screen on the wall with which to follow along – not that the angle of my head and neck would allow for screen watching anyway. I stare at a spot on the ceiling behind me.

As the ultrasound tech preps the computer, he asks the same questions as those before him:

    “Have you been here for an exam before?”
    “Yes.”

    “Why are you having this sonogram?”
    “Thyroid cancer.”

    “When was your diagnosis and your thyroidectomy?”
    “November 2007. January 2008.”

I’ve probably had at least 25 neck ultrasounds in the time since. This process should get easier. But it hasn’t, not yet. I don’t know that it ever will, now.

This is technically a routine test, the sonogram that I get twice a year before meeting with my endocrinologist. My last many such sonograms give me no reason to believe that this one will be anything out of the ordinary.

But as I lay on the bed, my head craned up and to the left as the warm ultrasound gel is applied and ultrasound tech slowly moves the gizmo along the chain of lymph nodes under my right ear, I can’t help but wonder what if. What if this is the time that the trend of “nothing to worry about here” changes? What if rather than the radiologist’s reading of “no measurable change” I receive a report of “more follow-up needed”?

I remember that in my haste this morning, I didn’t give my son a kiss goodbye. Why didn’t I give him a kiss goodbye? Why did I rush?

The ultrasound machine beeps as the tech clicks, registering a picture for the radiologist to assess. I never know whether to worry about the number of clicks and beeps. Do more of them mean there are more potentially suspicious lymph nodes in the pictures? Or do they simply mean that I’ve gotten an especially thorough technician?

Sonography is both an art and a science, my doctor has reminded me. What one sonographer picks up in one exam, the next may not see. Instructed to turn to the right, I stare at the clock on the wall and the minutes tick by. Have I gotten a particularly artful technician today? Or a new and inexperienced one who needs more time to determine what he’s seeing?

I can’t know the answers to those questions. And I can’t ask questions, because the technicians aren’t supposed to tell you what they’re seeing. (Sometimes they do, anyway. I’ve been on the winning and losing side of those technician diagnostics, and I’ve decided that I’d rather wait for the official radiology report.)

So I keep quiet, waiting for the beeping to stop, to be given the OK to get up, to wipe off the ultrasound gel that has now melted and oozed down my neck, to put my jewelry back on. To be told that my doctor will get the report in a day or two.

To open the door and head back into my regularly scheduled day, already in progress.

I wish this would get easier.

Do you continue to struggle with scanxiety? What helps you cope? Share in the comments below!

(Blog originally featured on Lacuna Loft. )

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michelemv   
Michele is a wife, mom of two, thyroid cancer survivor, and writer living in Washington, D.C. She blogs about life after cancer and infertility- as well as random musings as a transplanted Bostonian, a devoted Red Sox fan, and an infrequent and slow runner- at A Storybook Life. Follow her on Facebook and Twitter.

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