Editor’s Note: This is the first of two patient perspectives on surveillance frequency and “scanxiety.” The second perspective—coming next month—explores how an individualized approach to scheduling scans can benefit patients.
Sometimes I forget when I have a scan coming up—until my body reminds me. I get increasingly irritable, overwhelmed by the smallest things, unable to sleep or eat properly, at my wit’s end until I remember, right, scan next week.
At the hospital, my voice will break when I’m checking in. My legs will wobble as I climb onto the bed of the machine. I will hold back my tears in order to lie still. And all the mindfulness and medication in the world will not prevent me from obsessing over the possible outcomes every waking moment until my oncologist has the time to go over the report with me, at which point I will, in the best-case scenario, breathe a sigh of relief and go on with my life for a few months before the cycle begins anew.
It’s a hard way to live. The catchy little portmanteau of “scanxiety” hardly seems to capture the existential dread of regular testing for a deadly disease. And like any patient, I gratefully welcome studies that seek to lessen this particularly excruciating experience. But no lung cancer study I’ve read has convinced me that I would be better off without surveillance scans.
Maybe it’s because no study has ever been done on a population with my exact characteristics—not just generic staging but specific TNM classification and treatment modalities, cancer type including biomarkers, age, gender, diagnostic, and treatment timeline including medications and dosage, composition of cancer care team, surveillance protocols, socio-economic factors, etc. ad infinitum.
Even if that study did exist, I’m not sure it would be enough to counter the fact that almost every lung cancer article I’ve ever read begins with some version of the following statements:
- Lung cancer is the leading cause of cancer death worldwide.
- While there have been many advancements in treatments in recent years, survival rates remain low.
- Even when treated with curative intent, recurrence rates are high.
Simply put, my scans are not the cause of my anxiety. I am anxious because I have a disease that kills most people who get it, even people like myself who have potentially been “cured.”
The alternative to my scanxiety, therefore, isn’t no anxiety—it’s anxiety all the time.
Every day that my fatigue is a little worse than usual. Every time that I forget a word or miss a step. Headache? Chest pain? Night sweats? Is this just part of life, part of aging, part of treatment? Or are those mutated cells growing again, multiplying unseen and unfelt?
I can’t tell the difference, and while I’m open to being corrected, I don’t believe even the most experienced oncologist can, either. At least, not without a scan.
So a study that finds no overall survival benefit to scans doesn’t tell me that scans may be unnecessary—it tells me that the medical system still hasn’t figured out how to use imaging to improve prognosis for even the earliest stages of lung cancer. It makes me wonder whether scans are being read properly and acted upon in a timely manner, or if it is a part of a self-perpetuating cycle where poor outcomes for recurrence means fewer resources for these patients. It reminds me that while so much work has been done by some of the most dedicated and brilliant scientists and healthcare professionals, there is still so much more to do.
In the meantime, all patients can do is try to make the best decisions we can with the information available. And for me, scanxiety is the price I’m willing to pay in order to have intervals of relative peace of mind, not only for myself but for the people who care about me.
Overall survival may be an important clinical measure, but it’s not the only thing that matters. Even if regularly scheduled scans don’t help me live any longer, they do help me live better.