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Scanxiety

Scanxiety.  It’s a term that entered my vernacular around the same time as anaplastic large cell lymphoma.  Its definition may seem obvious – the anxiety that comes along with the dreaded scans that tell whether or not the cancer is receding – but there’s so much more to it.

A quick background on diagnostic scans

For those who don’t have cancer or haven’t been diagnosed for long, let’s review.  PET scans, CT scans, and several other types of scans are the tools by which doctors tell if your cancer is responding to treatment and/or getting better, worse, or holding steady.  I could delve into how each works, but you’d need a degree in biology. 

Let’s just say that they’ve developed a way to inject you with little cancer squatters that find your juicy, juicy, tumor and move on in for a while.  The scans detect those little squatters and light up the tumor-like Manhattan at Christmas.  Using other complicated equations, they can determine how much metabolic activity is taking place, the size and shape of the tumor, and if it’s getting bigger or smaller.  It’s a staple for the cancer standard of care and a constant source of anxiety for all of us who are unlucky enough to need it.

Stage one: The “what ifs”

One of the worst scans is that first one after you start chemo treatment.  Usually, doctors order one about one-third to one-half the way through, and everything hinges on those initial results.  Just walking into the scanning office takes a tremendous amount of courage.  You sit down and wait and all sorts of things are going through your head – is the chemo working?  Did my tumor shrink?  What if it’s not working?  Do I have a tip for the parking attendant?  Well, the last one isn’t cancer-related, but you get the idea.  Besides, who carries a bunch of singles around anymore?

Stage two: Claustrophobia

As if the anxiety of the “what ifs” wasn’t enough, there’s the scan itself.  Any of you who haven’t been subjected to the “noisy donut of claustrophobia,” consider yourself extremely lucky.  It’s a big metal ring, and you lay down on a table that slides through it.  For a good idea of what this is like, make the “OK” sign with your left hand, and then put your right pointer finger into the hole.  You get it now.  I assure you, it’s a lot less fun than what that gesture usually signifies. 

As if your journey into the center of that horrible beige bagel wasn’t awesome enough, they strap you down and then put a big wide Velcro strip over your midsection that traps your hands at your sides.  It’s as if the person who invented the thing said “hmmmm, putting someone into a deafening metal coffin?  Nope, not phobia-inducing enough!  I want more terror!  Make them unable to move their hands and arms as well.”  I couldn’t think of a much worse punishment unless halfway through the scan a bucketful of giant hissing cockroaches was released, in which case I’d just tell them to kill me right then and there.

Stage three: Guessing and waiting

Even when you are done with the scan, you don’t get the results right away.  The technicians who help you get in and out and the ones who operate the machine aren’t allowed to give you results for legal reasons, I assume.  Either that or they just want to keep the “maximum terror” effect going for as long as possible.  So, on the way out, you are left trying to guess via facial expression what your prognosis is. 

Does the tech’s face mean your cancer-riddled body is about to disintegrate?  Or did the technician just have some questionable drug store sushi for lunch?  You’ll never know!  It’s maddening.  Finally, for one more kick in the teeth, you have to wait until the doctor reads the report from the radiologist and tells you if you’re in for a party or a funeral.  It’s a system designed to make you wait and stew and stew and stew some more.  I feel like no one ever took into account the mental toll it takes on the patient themselves.

Final stage: Receiving the results

The last step is that visit to the doctor’s office when you do eventually get those results.  It’s the same as the wait in the scanning office – the same “what ifs,” the same anxiety, the same fear.  Even walking to the exam room with the nurse all you can think is “what if it’s not working?” 

It looms as large as the Empire State Building, and there are no colorful lights at the top to help distract you.  It’s a huge buildup and the most ironic part is that when you actually get to speak with your doctor, the whole thing amounts to a simple sentence that takes five seconds.  Either it’s “so it looks like the chemo is working,” or it’s “the scan isn’t showing what we’d hoped for.”  That’s it.  It’s mind-blowing to me that your whole life from that point forward is determined by eight words.

My scan results

Fortunately, my eight words were the good ones, so I’m on course to probably beat this thing, but it’s far from over.  I have at least five years of scans, and that means five years of anxiety, worrying about if it’s going to show the cancer on the move again.  Even after the five-year period there will always be that lingering concern about the return of the Big C and whether or not my eight words will be the lucky ones again.  At this point, just the word scan causes a spike in my adrenaline.  If someone across the room even says “Scandinavia” I turn my head like Cookie Monster hearing a fresh packet of Chips Ahoy opening.

Scanxiety is part of cancer, there’s no way around it.  You can try to ease the burden by planning for the worst case scenario.  You can even mitigate some of the fear while you are actually in the tube by wiggling your fingers and toes, but the fact is the fear will always be there.  If you’re human you will feel it, and it can be life-changing.  Talk soon.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Ann Harper moderator
    2 weeks ago

    Scanxiety is definitely a real thing. Each time I go, I hope the cancer is getting better or at least not getting too much worse. I will probably live with my cancer for the rest of my life so I have plenty of scans in my future. Each time I think – it is what it is, but I dont want what it is to be bad.

  • Daniel Malito moderator author
    6 days ago

    @annharper It really is the perfect word, and it happens every, single, time – you’re right. Even years after, it still feels like that old feeling I got the first time. Thanks for reading, keep on keepin’ on, DPM

  • Ann Harper moderator
    6 days ago

    I love reading your work. Thanks for sharing.

  • Dan122
    3 weeks ago

    Great words again Daniel, you make out terrible time into laugh.
    Eventualy the PET result is: the drugs are working but slowly so you get to do more cycles and rescan. You get stuck in the scanxiety.

    That is where I’m now. I had a biopsy on the arm pit so the arms up pose is very painful. So I got the scantorture also.
    All that is just one more bump on the road since the treatment is working.
    Cheers

  • Daniel Malito moderator author
    2 weeks ago

    @dan122 Laughing is the only way I can get through some of it. Actually, more accurately, making others laugh and forget the mental aspect of cancer, if even for a small amount of time, gives me a wonderful purpose in life. When everything else is a tornado, I know I can rely on that. Bumps on the road is right, but the road keeps going, always! Thanks for reading, keep on keepin’ on, DPM

  • Deb Wesloh moderator
    3 weeks ago

    Love this! A new word to add to my cancer vocab! I have serious scan anxiety. Of course it doesn’t help that almost every scan or procedure I’ve has resulted in negative results. Ugh!
    Glad things are looking up for you. Maybe in time your scanxiety will diminish. Best!

  • Daniel Malito moderator author
    2 weeks ago

    @dbwes62 I’d love to take credit for the word but my sense of fair play requires me to admit someone told it to me a few months ago and I, like you, thought it was so simple and illustrative that I had to write something about it! I mean, when something comes along that perfect, how can you not? Thanks for reading, keep on keepin’ on, DPM

  • Yolanda Brunson-Sarrabo moderator
    3 weeks ago

    @danielpmalito Fear is part of this life just in general, it’ s just double when we’re sick, and the process. The cookie monster will always have his head up for wonder, hope, curiosity, and those cookies. Wishing you continued best!

  • Ann Harper moderator
    2 weeks ago

    Hope is key!

  • Daniel Malito moderator author
    3 weeks ago

    @yolandabrunson-sarrabo Thanks! I can always count on you to bolster my positivity if I ever falter. You are a beacon, in case no one ever told you that. As i often say, bravery isn’t not being afraid – it’s being terrified and marching straight into that door anyway. People like you make it easier! Keep on keepin’ on, DPM

  • Yolanda Brunson-Sarrabo moderator
    3 weeks ago

    @danielpmalito Thank you! We all have that power of bravery (deep down). It just takes situations like this or worst that allows us to take issues head on. Best- positive vibes only 🙂

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