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.

Scanxiety

I have had more MRIs in my life than I can count. Some yielding good news that spots were getting more and more difficult to see. Others showed minimal growth, which medically was read as consistent and stable. Sometimes I stayed with the current treatment protocol and sometimes it meant beginning something unknown to me.

Almost every MRI for me brought on its share of anxiety because I have some degree of claustrophobia. Waiting for results also brings its share of stress. The machine itself is long and tubular with enough room to slide an average sized body in and out. It doesn’t look too impossible when I’m standing outside of it and plucking up my courage. Things change when the technicians strap me in, give me a panic ball to squeeze since they’ll be in a different room for the test, and roll me into the tube. Suddenly, I am alone. My vision is limited to sterile white and I can see only an inch or two above my face. I can’t get out on my own and that’s when the trapped feeling starts growing. The strapped in part is so unsettling for me. Breathing is going to be impossible in there, especially when I am to listen to instructions on when to breathe, hold my breath, and then relax. A contrast dye is shot into me that makes my heart and pulse race. It makes me feel a little sick, and then I hear the “take a breath” prompt. Sometimes I just can’t get it done in time because of my racing heart, which makes me feel like I’ve screwed up the most informative part of the test. Panic, panic, panic. I’m stressed out. It goes downhill from there. Much to my surprise, the test always gathers usable information.

I have heard from a few people lately who have been nervous about scans and various tests. I doubt how I’ve described things for me has lessened those feelings for them. Sorry. Others haven’t been reassuring or helpful either from what’s been shared. Instead anxiety levels have risen as “friends” have told them how awful these things are. Do they really feel this is helpful? Newsflash – it isn’t! Saying something is hard is honest. You can still be honest by providing a couple of reassuring comments.

My hope is something that I share about how I’ve dealt with scans, tests, etc. will be helpful for anyone with scanxiety. Scans have gotten easier with each passing one. I know that it’s going to be tough to catch my breath after the contrast injection and I can mentally prepare for it. If it takes me an extra second or two to start a breath hold, that’s what I now do and I don’t worry about it. The following are things that work for me, and they may work for others.

Tip #1: I like music piped in to relax me. This is a common practice. However, if music is unavailable I know what songs I can sing through in my head to pass the time.

Tip #2: I like a washcloth over my eyes with just a peeking place available so I still know where I am without having to be reminded the whole time.

Tip #3: Lavender essential oil on gauze placed on my chest provides enough aromatherapy for a calming effect. I suggest bringing your own if you are unsure if your facility provides this for patients.

Tip #4: Having the same technicians has a calming effect on me, too. My favorite tech actually hugs me when she sees me and that lets me know I am in a safe place. I also like a lot of communication and encouragement while I’m in the machine. It’s good for me to know when I’m halfway done and when I’m close to finishing.

Tip #5: Sometimes I try to reframe the overwhelming, closed in, trapped feeling with one where the machine is my own little personal cocoon where I am kept snuggly and protected for a short time. It’s a great place for prayers. I call on loved ones, spirits, and angels to be with me and protect me. Those are very warm and comforting thoughts.

Tip #6: It goes a lot easier if I take the time to have my port accessed beforehand than just settle for multiple arm pokes that are more like a hit and miss game of find a vein. Using my port doesn’t make my heart race or feel sick when the contrast dye is administered.

Tip #7: In general, the breath holds go much better if I count very slowly in my head until they are done. Some holds are short, some are up to thirty seconds. The long holds do get hard for me, but the counting lets me know that they have to be almost over.

Tip #8: Lorazepam. I have proven that I can get through MRIs without any extra drug help at all. I know I can do it if I have to, relying only on my other tips. The lorazepam relaxes me enough so I am both calmer, fully functional, and happier feeling in general.

Tip #9: I don’t find it helpful to tell people about upcoming scans. There are too many questions. It is so much easier for me to relax on my own before and after the test, and if anything needs to be shared later, later it is. There really isn’t a need to share when nothing really changes. If you get support from sharing scheduled tests with a lot of people, that is your choice based on the kind of support system you have.

Tip #10: Remember the goal of an MRI is to provide information about your health. I need the information – good or not so good – because either way it determines what choices are best so I can maintain a healthy lifestyle. My mother wasn’t open to MRIs and many other tests because of claustrophobia. I believe there also were other fear based and avoidant based thinking happening. Not knowing sadly didn’t work out well for her. I miss her terribly. She and I have many similarities, but as hard as it is for me, I have to get the tests so I know what’s what.

I know what to expect after so many of these. This is a place where I’ve become very vocal about what I need – the music, the lavender, the washcloth, the encouraging words and announcements throughout. I always take extra good care of myself afterwards, whether it’s a treat on the drive home, or a long walk where I can decompress and appreciate being free from the MRI machine.

All these scans would be a much better time if I could find a way to make sure every scan provides the kind of results I need and want. In the meantime, I have found a way get through them with less dread and a little more ease.

Scans are just one example of what causes people anxiety. Everyone has something that they find difficult to do or causes them to worry. Anxiety is often worse than the event itself. After you’ve done it, you realize it wasn’t so bad after all. Maybe you’ve even developed a few hacks on your own that help you cope or dismiss your anxiety and stress entirely.

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Whether brought on by medical stuff or other anxiety triggers you have in your life, what helps you lessen anxiety?