Published August 6, 2013 By Dr. Susan Love

Now almost a year from my bone marrow transplant I feel the need to vent about the fact that we call people who have been given a diagnosis of cancer, survivors.  I was never that comfortable with the term before and am now even less so.  I think the term probably came from the days when a diagnosis of cancer was an immediate death sentence.  Having escaped that fate, much like getting through a hurricane or tsunami, meant that you were a survivor.

Survivor implies that you have vanquished cancer when most of us live with the knowledge that it could come back at any time. Now, with many of us living for years with recurrences or metastatic disease and others being “overdiagnosed” with diseases that may never have gone on to become life threatening (see blog http://blog.dslrf.org/?p=1584) the term survivor feels misplaced.  We don’t use the word survivor for people with heart disease or talk about rheumatoid arthritis survivors.  They are acknowledged to have chronic diseases that have lifelong consequences, periodically require treatments, and may ultimately be the cause of their deaths.  Cancer is also often a chronic disease with collateral damage from the treatments, a continual risk of recurrence and the likelihood of a shortened life span.  We should acknowledge that and be comfortable saying “she has cancer” rather than “she won her battle with cancer.”  (I never liked the war metaphor anyway.)

This would change the conversation regarding “survivorship,” a euphemism for dealing with the consequences of treatment and the continual fear of recurrence.  We would stop looking at women with advanced disease and wondering what they did wrong, as if the outcomes were totally under their control.  We could start to realize that just as with heart disease and arthritis, advocacy needs to be aimed at prevention and finding the cause rather than detection.  The original goal may have been increasing the number of survivors when the majority of people died of the disease shortly after being diagnosed.  Now, not only should the label change but the goal has to change with it: to go beyond the cure to finding the cause.

I am not a survivor; I am a woman living with cancer.  It may be dormant for now, but there is always a possibility that it will reemerge and I have to live with that knowledge along with the consequences of my treatment.  I will probably eventually die of something related to this diagnosis. This defines my reality and I can live with it!

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