Survivorship Is a Matter of Perspective

TON - October 2013 Vol 6 No 9 — October 30, 2013

“Words have meaning and names have power.”
Author Unknown

The word survivor has come to be widely identified and associated with words such as courage, heroine, brave, and fighter. Thus, it might surprise many that this socially endeared title is often debated in the breast cancer community. I have read numerous opinions regarding this topic in the breast cancer blogosphere and have talked to many women “cancer survivors” who are uncomfortable with the label. Some believe that the word is too limiting. Some believe that it is too arrogant. Some women are confused as to when survivorship begins. Some women question whether their stage of diagnosis gives them “rights” to the title at all. So many questions and so much discomfort regarding the use of this word begs the question, who created this title and who decides when and to whom it applies?

The National Cancer Institute defines an individual as a cancer survivor from the time of diagnosis, through the balance of his or her life. Whether one who has been diagnosed with cancer defines or sees himself or herself as a survivor is solely a matter of perspective, based on each individual’s personal experience. When we examine the controversy around the use of the word survivor, we must remember that each person’s experience is unique and that therefore it is unlikely that one title will fit all.

Most people associate the words breast cancer survivors with individuals who have had to endure treatment such as chemotherapy, radiation, mastectomy, targeted therapy, and/or breast reconstruction. These people are believed to have suffered all the side effects that go along with such treatments. After their treatment is complete, they are considered “cured” of the disease. They are celebrated as survivors! Yet there are many who do not like the term survivor for various reasons. A popular quote from Maya Angelou says, “My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style.” Those who share this attitude do not like to refer to themselves as merely survivors. They prefer the term Thriver or SurThriver—terms that put an emphasis on the quality of life they have come to believe is of the utmost importance.

While some feel the survivor title deemphasizes the importance of quality of life, others feel critical of a title that designates them as heroes of a battle they never chose to fight. Some feel it implies that those who have survived are somehow superior to those who have lost their battle to cancer. Beth L. Gainer expresses this position well in her blog “Calling the Shots,” when she says, “The problem is that on a subliminal level (or maybe not too subliminal), there’s a blame game going on: those who survive did something heroic; those who don’t survive seemingly just weren’t tough enough.”

Even for those accepting of the title of survivor, there is the question of exactly when it applies and the degree to which it is specific to the disease stage at diagnosis. Newly diagnosed cancer patients commonly question whether survivorship begins at diagnosis, after surgery, after treatment, or after their fifth year. Those who have been diagnosed with early-stage breast cancer are often referred to as the “lucky” ones. An early-stage diagnosis hopefully results in less invasive treatment options along with survival and cure rates that near 100%. In spite of their “good fortune” of catching their cancer early, having a less grueling treatment regimen than those with a later-stage diagnosis leaves some women feeling that they have not “earned” the title of survivor. The recent recommendation by the Journal of the American Medical Association that some early-stage diagnoses no longer be referred to as cancers can only further confuse cancer patients as to when and with whom the survivor title applies.

While there are many sources of discomfort with the title survivor, it is those with an advanced-stage diagnosis who may struggle most with the label. Their view of survivorship is understandably different. They have a cancer that doctors say cannot be cured, but only controlled. Because of their pending fate due to their cancer diagnosis, some may struggle to identify themselves as survivors. I recently heard a woman diagnosed with stage IV breast cancer refer to herself as a survivor. She stopped mid-sentence and said, “Yes, I still call myself a survivor because I’m still here,” as if referring to herself as a survivor needed defending. In search of a more accurate representation of their experience, the metastatic community has coined the term metavivor.

As a breast cancer survivor, I have never had a strong reaction to the title. I use it and will continue to do so because I know it is easy for others to understand. Regardless of my own position, I listen and care about the concerns and viewpoints of others regarding this topic. As the opening quote implies, I believe that a name has the power to shape not only how others see us, but more importantly how we see ourselves. Survivor is a single word used to represent a diverse array of people and their experiences with a disease that, according to the National Cancer Institute, “is not just one disease but many diseases.” We should bear in mind that, although cancer takes so much from us, it cannot take our right to define ourselves.

Angela Long is the founder and creator of Breast Investigators. Breast Investigators serves as a comprehensive resource guide to help those affected by breast cancer readily gain access to quality information, care, assistance, and support. Visit www.BreastInvestigators.com.

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