It seems appropriate that my yearly neck ultrasound and six-month appointment with my endocrinologist occurs in January (and always on the 17th, no less), which not only marks the start of a new year but is also Thyroid Disease Awareness Month. It also brings to mind another important topic—scanxiety. I’ve covered what this term means and how I cope with it before in this post, but it bears reminding. Scanxiety is the very real fear a cancer patient or survivor may feel when an upcoming scan is approaching. I, myself, have struggled with scanxiety, especially in the immediate months after my thyroidectomy. The thoughts about my cancer recurring or wondering if the surgeon got out every last cancer cell was always on my mind. As time went on, I began to catch my breath. I relaxed and reminded myself that I was not only a warrior—I was a survivor. But then 2016 happened, and a routine trip to my primary care physician and ensuing blood work revealed that my antithyroglobulin levels, a cancer marker for those with an autoimmune condition, like I have, were once again elevated.
Panic set in. Rising numbers? The head and neck surgeon’s warning about monitoring my blood levels and needing further treatment replayed over in my mind. Was my cancer back?
Months and months of a vicious cycle of testing and waiting was the end result. A full year later, I underwent a trace dose of radioactive iodine and a full-body scan to see if anything lit up in my neck area that would indicate a recurrence. Nothing did. While I should have been elated, the results begged more questions than answers. If no cancer cells were detected, then why were my levels high again? What else could it be?
A year turned into two and then three, where my antithyroglobulin levels remained out of range. But no one seemed particularly alarmed—except me, the patient. What next? Do I just accept the fact that my numbers are elevated and hope and pray it’s nothing more than that? For the better part of the last few years, that’s exactly what I’ve done. I’ve continued to undergo my routine neck ultrasounds, go for blood work to check my thyroid levels, and see my endocrinologist twice a year, never fully convinced that the situation was entirely under control.
Years of being a patient advocate and sharing my story have taught me that one must always advocate for herself. I continue to ask questions, question results and do my due diligence so that when those doctor’s visits come around, I’m prepared. I have never stopped asking, ‘why,’ when I’m presented with my most recent blood report.
If you’ve read my blog for any length of time, you’re likely familiar with my thyroid-versary posts and yearly updates. My survivor status is something I’m always grateful for and these appointments serve as important reminders not to take it for granted…ever.
I tell you all of this, my friends, because this is scanxiety and the part of being a cancer survivor that you often don’t even know exists. I now embrace the scanxiety that accompanies me on my journey like an old friend that visits periodically. It doesn’t instill the same fear that it once used to, but instead, it sends a gentle wave from the corner of the room so that I can acknowledge its presence. It will no doubt appear today as my mind drifts off while the ultrasound wand glides over my neck where my thyroid once resided. But like each time before, the gentle nod from my endocrinologist offering a clean bill of health will send it on its way…at least for now.
carol Gregory says
thank you for this. I do definitely have ‘scanxiety’! Every step that I take deeper into the hospital for my tests makes me feel less and less capable, more of a faceless patient, likely to have everything back again. It has been ten years now, but I still need to see the endocrinologist for reassurance, ask for explanations of test results, wonder if every symptom I have is a result of the cancer returning or a result of the RAI or – SOMETHING. I am always aware that I had cancer, was so sick with it, but can’t talk about it because no one wants to hear about my paranoia. Anyway! Gloria Carol