When Does Survivor Status Start?

By Melanie Bone, MD, PA

The latest data available from the National Cancer Institute tells us that there are almost 12 million cancer survivors in the United States. But when do you actually become a survivor? Are you a survivor from the day you get cancer even if you don’t know you have it? Are you a survivor from the day you are diagnosed? Are you a survivor from the day you finish treatments? Five years later? Forever?

As a survivor, I can tell you that not everyone agrees on the definition. Before my own cancer, I thought that you could consider yourself a survivor if you made it five years from diagnosis. Now I realize how arbitrary and unimportant it is to assign a time frame to the definition.

My confusion about survivorship began when I was diagnosed with Stage III breast cancer at age 40. I had found an enlarged lymph node just before my fortieth birthday; but because my mammogram and sonogram were both normal, it was seven months before I went in for a biopsy. To say I had a lot on my plate at the time is an understatement: my four children were ages 2, 3, 4, and 5; I was working too much and too hard in my solo OB/GYN practice; I was doing my best to be a great wife to my trial lawyer husband; and I was training for marathons to stave off the heart disease that is so rampant in my family. Despite the overwhelming obligations that filled my life, I finally listened to my sixth sense and asked to have the node taken out. The diagnosis that followed was no surprise to me; somehow I knew.

I was less certain about when to call myself a survivor. While in bed suffering from chemotherapy-induced fatigue, I surfed the Internet to find cancer-related information and became interested in various advocacy and support organizations. But the membership forms stumped me; I didn’t know how to answer the question of how long I’d survived breast cancer. In my mind I wasn’t a survivor yet—I was a hanger-on in the middle of treatment.

I was confused. Did that mean I couldn’t join? A cheerful operator at one of the organizations cleared things up: anyone diagnosed with cancer is a survivor from the day they are diagnosed. What a great membership ploy! Theoretically, I could die of the disease before the end of chemotherapy and radiation and still be a member—and a very short-lived survivor.

As I considered the various definitions of survivor I encountered during this time, I came to realize that survivorship is highly individual. There are some survivors who, having just recently completed treatment, are well adjusted to their diagnosis and move forward like 10-year survivors. Conversely, there are some survivors who, at 15 years out, struggle with issues similar to patients still in the midst of initial treatment.

Still there are similarities in the stages and the challenges that survivors face. For most of us, the first five years are spent trying to avoid a recurrence while living in a state of chronic anxiety. We try to perfect our diet and exercise regimens and live “better.” We feel pressured to make the most of each day, just in case. Every ache and pain might be the cancer coming back. The scans we undergo to check for recurrence are torture.

Each of us engages in various techniques to control this anxiety and cope with the reality of the diagnosis: We work on rhythmic breathing and creative visualization; we listen to music; we distract ourselves with other activities; we engage in advocacy work. And some, like me, find that denial is the most useful approach, going on about their daily business and pushing their fears into the back of their minds, consciously and subconsciously ignoring or forgetting them.

For many of us, the coping strategies in these first years gradually give way to a fragile peace. Cancer stops being the first thing we think about in the morning

or the last thing we think about before bed. We slide back into old habits, stopping just short of settling completely back into being our old selves, always aware of the scars—emotional and physical—that remind us of the disease. The fear of a recurrence, even if dampened over the years, never completely goes away. Each person has triggers that bring cancer right back to the fore. It might be a smell or taste associated with cancer or hearing about someone else’s diagnosis. As we continue along, it becomes clear: our survivorship status will never really end.

Though we are individuals, our commonalities as survivors make us members of a club. Make no mistake; it is a club we never planned to join, but it has its benefits. Cancer survivors who meet other cancer survivors already have common ground on which to base a friendship. And many of us survivors, in time, feel that cancer was one of the best things that ever happened to us. In facing our own mortality, we are empowered to change our lives for the better. There is a reason why more than 50 percent of women treated for breast cancer get divorced: once they are diagnosed, there is no time to waste in an unhappy marriage or with superficial friends who take but don’t give back.

To this day when someone asks me how many years I have survived, I get a millisecond of anxiety inside. I was diagnosed in August 2000 and finished chemotherapy and radiation therapy in April 2001. Am I an 11-year survivor since diagnosis, or am I a 10-year survivor since the end of treatment? Or am I a six-year survivor since my five-year mark?

To take the pressure off, I answer differently depending on my mood. Sometimes I say that I was diagnosed in 2000. Other times I give a number just to make them happy. Recognizing that many people have asked the question just to ask, not really caring what answer I give, I don’t worry too much. On occasion I smile demurely and say that I’ve lost count or don’t even remember. After all, does it really matter? I’m still here.