Today more than ever before, words matter. And, as a society, we are more sensitive to descriptive preferences. People are living longer, and better, with lung cancer than ever before. It’s time we think about survivorship (or whatever you decide to call it) differently and take our cues from you. You have the power—define your story the way you want to.

Are you a survivor?

Over 30 years ago, a goal of the National Coalition for Cancer Survivorship (NCCS) was to move people diagnosed with cancer from being seen as victims to survivors. This was largely achieved by broadening the definition of a cancer survivor to include anyone, “from the time of diagnosis and for the balance of life.”

This concept resonates with a lot of people with cancer—and maybe it does with you, too. But we also know it doesn’t work for everyone. For some, the word survivor implies cured. Are you a patient until you are out of treatment or a survivor from Day One? Some prefer to call themselves thrivers, advocates, or people living with lung cancer.

Is lung cancer now a chronic disease?

As more people are living longer with and through lung cancer, there’s been discussion around the idea of considering it a chronic disease. The National Cancer Institute defines a chronic disease as “a disease or condition that usually lasts for 3 months or longer and may get worse over time…and can usually be controlled but not cured.”

Different people have different views about this topic. Some people in the lung cancer community feel that calling lung cancer a chronic disease minimizes the impact of the disease and could justify keeping the disease underfunded and disregarded. Others wholeheartedly embrace the idea, saying it gives hope and context to what they are going through. Some believe the idea of lung cancer as a chronic disease normalizes their experiences. Still others say this is something to aspire to—but we aren’t there yet.

What if treatment never ends?  

Does your treatment center have a ceremony, like ringing a bell, to celebrate the end of treatment? We know not everyone is thrilled by treatment ending; but if you are in continual treatment for lung cancer, you don’t ever get to ring the bell. And you may not be able to join a join a survivorship program, as some centers require participants to have completed treatment.

Thankfully, many centers are rethinking old definitions and patterns of operation.

Is it a journey?

Merriam Webster defines the word journey as “something suggesting travel or passage from one place to another.” So, in a sense, the word journey can describe the cancer experience. Synonyms for journey include excursion, jaunt, and tour, suggesting leisurely, pleasant trips. For those reasons, calling an emotionally and physically taxing lung cancer diagnosis a journey just doesn’t work for everyone.

It’s up to you.

What term works best for you? Is it a journey? Is it a chronic condition? How do you describe yourself and your lung cancer story?

Your preferences matter.

It’s okay—and important—to tell your family, friends, coworkers, and health care team what language you want them to use when talking about your lung cancer. They can’t know if you don’t tell them. Assume that most people want to say and do the right thing, so help guide them. Because you are a unique person with your own special style and preferences. A lung cancer diagnosis doesn’t define you and neither should anyone else.