Posts Tagged ‘National Cancer Institute’

What’s wrong with being a Cancer Survivor?

July 9, 2010

After I was diagnosed with  cancer, a friend of mine, who had also been diagnosed with cancer some years earlier, invited me to join a training and fitness group for anyone who had experienced cancer called Capital of Texas Team Survivor.  It was a wonderful message to me that I would survive the cancer experience, which in that time of fear and uncertainty was a very positive message.

But not everyone thinks the term cancer survivor is positive. Recently a friend suggested that from a marketing point of view, Team Survivor did not send the best message to the public nor to those dealing with cancer. Truthfully, this really surprised me. It had been such an empowering idea for me, I was confused why it wouldn’t send a positive message to anyone.

According to Webster, a survivor is “a person regarded as resilient or courageous enough to be able to overcome hardship or misfortune; a person who continues to function or prosper despite hardships or setbacks.”  This really seemed to be a compliment and not much help to understanding why the term might be controversial.

The phrase “cancer survivor” was coined by Dr. Fitzhugh Mullan in an article in the New England Journal of Medicine on July 25, 1985. The article was titled “The seasons of survival: Reflections of a physician with cancer.”   Cancer, in that time, was a very scary diagnosis.  The perception that a person with cancer was destined to die a painful and scary death was common.  To be a survivor sent a very powerful message.  Now, 25 years later, cancer is still scary but many more people are known to be living long after a diagnosis of the disease.  And this has led to confusion and misconceptions about what, exactly, does being a cancer survivor mean.

According to the National Cancer Institute, “an individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life.  Family members, friends, and caregivers are also impacted by the survivorship experience and therefore included in this definition.” The National Coalition for Cancer Survivorship (NCCS) created a definition in 1986, when cancer was  a disease people needed to learn to fight in order to empower patients to makes decisions about their care and to push for better research and treatment.  The NCCS definition also included families and caregivers.

Yet, there is disagreement about the definition and use of the term.  Some don’t want to be considered survivors because they want to consider themselves cured and don’t want to paint a picture that they are still dealing with cancer.  Others say they are living with or journeying with cancer, but don’t want to say they are a survivor because to them it implies they have beaten cancer and the experience is complete.  Some say being a survivor stigmatizes them, makes them different and identifies them as only someone who has experienced cancer, while others don’t think of themselves as a survivor but as a victim of cancer, especially if they are facing end of life issues as a result of the cancer. To some lay public, the term might suggest that a cancer survivor has beaten their cancer, much like an airplane crash survivor lived through the experience but it is over.  For many living with a diagnosis of cancer, the knowledge that a recurrance is possible  lingers in the mind, so this misconception can lead to frustration and misunderstandings.

Yet, there doesn’t seem to be a universally accepted term that is better. And so, I go back to Webster’s definition: “a person who continues to function or prosper despite hardships or setbacks” and I know that is what anyone who has received a diagnosis of cancer is–a person who continues to function despite hardships.  And I am honored that I count myself among them–I am a Cancer Survivor.