Redefining Survivor

Why the Language of Cancer Survivorship Doesn’t Fit Everyone

Cancer survivor has always been a sensitive term for me. I’ve never thought of myself that way, and I’ve never felt comfortable using the words. Even “survivorship” feels uneasy, both premature and overly simplistic. It's a term that can feel empowering to some, but to others, it can feel like an ill-fitting badge for a story still being written. It doesn’t fully capture the ongoing reality so many of us face: the long-term side effects, the ever-present fear of recurrence, and the lingering sense of vulnerability that persists long after treatment ends.

I find the word can also suggest a sense of finality, as if the struggle is over and won. But with cancer, the emotional, physical, and psychological impact often lingers long after treatment ends. For many, survivor is a label that doesn’t leave space for grief, trauma, or the complexity of what comes next. It can also unintentionally exclude those living with metastatic cancer or those still undergoing treatment, whose journeys don’t fit the conventional narrative of survival.

We were never able to refer to my late husband, Nasir, a survivor, even though he endured some of the most rigorous and harrowing cancer treatments imaginable. A stem cell transplant for bone marrow cancer is considered in the medical community to be one of the most demanding procedures a patient and their family can face. He never once complained, even as the side effects became at times unbearable. He lived for five years after the transplant, but those years were marked by ongoing complications, additional treatments, and a failing immune system that slowly wore him down. In my mind, he was the ultimate survivor: resilient, courageous, and unwavering. Yet by the standard definition, he didn’t survive cancer. That disconnect still sits uneasily with me.

Two weeks ago, I lost a dear friend of 43 years, one of my college roommates, to leiomyosarcoma, a rare and aggressive form of sarcoma. She and her husband, Kevin, did everything they could over the past two years to manage the disease, but sarcomas can be relentless, and hers was. Tina wasn’t called a survivor in the end, but like my late husband, she embodied the spirit of one. She was a warrior: resilient, determined, and full of grace in the face of unimaginable challenges.

Survivorship Isn’t the End—It’s a New Beginning (and often a Messy One)

For a long time, I imagined that finishing radiation treatments (I’m still receiving aromatase therapy) would feel like crossing a finish line. I pictured relief, celebration, maybe even a sense of closure. But that’s not how it unfolded. Instead, survivorship has felt more like stepping into a fog that is uncertain, emotional, and full of invisible weight. It’s not the end of the story; it’s the beginning of a complicated new chapter.

Take, for example, my MRI today. It’s been 11 months since my last scan, far longer than intended. Normally, I follow a structured post cancer screening schedule: a mammogram every year, followed six months later by an MRI. But this past January, a scheduling mishap delayed the MRI until today. Five months overdue, and nearly a full year since my last mammogram. This kind of gap isn’t just logistical, it’s emotional. The lead-up to today’s MRI brought familiar feelings of anxiety, unease, and the what-ifs that creep in during the quiet moments.

Sitting in the waiting room today, surrounded by other women waiting for their screening test, I was reminded that survivorship isn’t about returning to normal, it’s about learning to live with a new reality. It’s about learning to live in a body you no longer fully trust, navigating a healthcare system that isn’t always seamless, and managing emotions that don’t fit neatly into the “you’re done now” narrative. The MRI took 25 minutes, but the emotional residue of fear, uncertainty, and the tension of waiting, are lingering long after I left the imaging center today.

This is what survivorship looks like for many of us. It’s not a destination. It’s a long-term state filled with monitoring, managing side effects, coping with fear of recurrence, and renegotiating identity. Survivorship lives in the in-between.

I’ve come to see this stage not as a conclusion, but as a different kind of endurance. Messy. Ongoing. Quietly brave.