“YOU HAVE CANCER.” “You’re cured.” “Never mind, it was refractory.” Hearing these three sentences over a span of five years between the ages of 27 and 31 has shaped the rest of my life. Cancer survivors always talk about their fear of cancer returning, but in my case, it never really left.
I was diagnosed at the young age of 27 with stage I papillary thyroid cancer in 2017. I learned the same year that it was metastatic, and in 2021 that it was refractory, meaning it did not respond to treatment. My thyroglobulin, a hormone my doctors used to track the response to treatment, had been positive, or above zero, since my initial diagnosis, indicating residual thyroid tissue that may or may not be malignant. The number remained stable over the years, so no one really questioned why it stayed positive, including myself. I had heard in a support group that in some individuals, the number could take years to go down to zero. My endocrinologist added, “For some people, their number doesn’t go down, and they end up being fine.” So I didn’t worry until 2021, when an ultrasound revealed that the tumor marker had indicated malignant residual tissue, and it was time for more treatment.
After three surgeries and a round of radioactive iodine therapy, I can declare myself cancer-free … for now. My endocrinologist recently stated that I had a more worrisome case, and I asked why. “Because it was metastatic and refractory, so we have to keep a closer eye on you.” I knew my case was different, that it was worse than I originally knew, but to hear it expressed so directly by my care provider was shocking.
Coping With Fears of Recurrence
Carly Flumer shares some of the activities that help her calm fears of cancer returning.
There is no way to completely remove the fear of recurrence, but I have found ways to relax, silence the voice and put it in a corner.
Talk to someone
- A friend or family member
- Your caregiver
- A psychiatrist or therapist, especially one who specializes in cancer survivorship
- Another cancer survivor or members of a survivor support group
- Deep-breathing exercises
- Spending time in nature
- Taking a hot bath
- Anything that helps to provide relief, even if just for a short time
Anything that can help clear your mind, such as:
- High-intensity interval training
- Walking or running
- Riding a bike
The fear of recurrence is always in the back of my mind. It’s worse before bloodwork and imaging tests, including my annual ultrasound. There’s a word for the fear, “scanxiety,” and it hides in the deepest recesses of my imagination. It comes to the fore as appointments for testing approach. When the scan is completed or the blood is drawn, and the results come back negative, the fear goes back into a corner until the next test. Cancer milestones also spark anxiety, especially in the beginning of the year—I was first diagnosed in January 2017 and received my refractory diagnosis four years later in February 2021.
I believe I will always carry the underlying dread of hearing the “C” word again, but I know I’m not alone. There’s a very powerful, strongly knit community of cancer survivors across the world that I have found on social media to be incredibly helpful by providing advice and hope when I need it, and I’m happy to be a part of it.
Cancer Today magazine is free to cancer patients, survivors and caregivers who live in the U.S. Subscribe here to receive four issues per year.