Scanxiety: It Persists, Even When We Aren't Getting Scanned

The last few days, I have felt kind of weird. Different, not entirely unwell. For three weeks, I have been on a new medication that has left me feeling unusually good in spite of the side effects. But it is a new treatment, and I have no idea how it is affecting my underlying lung cancer. It is probably too early to even tell if there has been a change in my primary tumor, much less the metastases throughout my body. I've been chronicling my body's changes and responses with the new meds, enjoying the shift away from chemotherapy that I had undergone for so long. But now, quite suddenly, I have been having bouts of lightheadedness, chest pressure, and feelings of both fatigue and malaise -- yesterday I could have written it off as just the byproduct of a busy day, but today these feelings persist and I have myself double checking every sensation.

Identifying and acknowledging my worry

These symptoms feel different from what I would expect if the cancer was suddenly leaping into overdrive, kicked into gear by the medication rather than having the brakes slammed down as I have hoped... I'm still getting my lungs full of air, I'm still experiencing apparently normal respiratory function -- and renal function, for that matter. In fact, for the past few days, I've noticed that most of my bodily functions are normalizing as I have adapted to the treatment's routine. The symptoms that I am feeling, however, do fit a particular profile: anxiety.

And it makes sense, even if I would not have consciously realized it. I had been so focused on how good I have been feeling, so very aware of the increased energy and focus that this new routine has allowed me to experience, that it inevitably had me questioning whether the drug was actually working.

And it was just about two days ago when my wife asked me when my next scan was scheduled for, my first since starting this new protocol. I doubt that it is a coincidence that I have felt the constricting sensation in my chest, even in my throat, along with the slight upset in my equilibrium, so shortly after having the idea of a scan planted in my brain. In fact, just realizing that, focusing a little attention on the absurdity of worrying now rather than enjoying the fact that I do feel so good, has made these symptoms ease up considerably.

Scanxiety rears its ugly head

Scanxiety, that anxiety associated with the trepidation of finding out whether one's cancer has progressed or diminished, is a very real phenomenon. It affects both the patient and caregiver alike. My approach with chemo had been the "wait and see" variety, with which I always went in curious because I knew that, if the chemotherapy wasn't working, there would be another option to try -- and after a while, I was so used to the routine on chemo that I always felt pretty much the same about my scans. After a while, I looked forward to them, the results always being about the same, my tumors essentially unchanged but ever-so-slightly bigger. There were no surprises, just a consistent sort of flow, and even before my last one, I anticipated and accepted the results without any additional stress, even celebrating when we decided that, rather than wait for "official" progression, we would move on to the inevitable next step to see where it would take us. (That "we" involved my wife and oncologist, because these decisions are rarely made in a bubble.)

Reflecting on and managing scanxiety

But this is new territory I now tread upon, and even as I may have personally avoided any noticeable scanxiety over the past two years, I have no solid grounding for the footwork ahead. Without a map, even just one I project based on past paths and a solid compass, I find that I truly don't know my north from my south. I have to move forward, yes, and trust that I am heading the proper direction until I hit some obstacle that nudges me a few degrees or blocks my way. With no reliable lodestone, it is hardly a surprise that my head spins.

We are not always aware of how stress and worry affect us. But taking the time to step back and evaluate these issues can do much to alleviate them. Scanxiety may never entirely go away, regardless of how confident we might feel or how cavalier we might act. But recognizing that it is real and truly does affect how we feel may make scanxiety a lot easier to deal with.^1-4

We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.