Words are society’s most powerful way of framing the issues of our time. For thousands of years, philosophers have discussed how language affects perception. The words we use shape our filter around an issue; yet, in the age of people first language and politically correct speech, there remains many blind spots where we continue to utilize labels that feed into outdated and inaccurate perceptions. Living in an era of medical and technological breakthrough, we must often embrace new labels in order for our thoughts to grow and change with the times.
Individuals living with cancer are one of the groups that have been held back by old labels. Currently, it is acceptable to call anyone impacted by cancer a “cancer patient”, or “cancer survivor.” Why have these labels been allowed to identify 500,000 individuals living with cancer in America? We do not name someone with diabetes a “diabetes patient.” People first language teaches us that a person is more important than a disability/disease. So why do we continue to allow cancer to be more important than the individuals it affects and use our speech to determine that a disease can define a person’s identity?
To gather perspective on these labels let us look at their origins. From the 1940’s until the 1980’s there were very few, if any, effective treatments for those with a cancer diagnosis. The term ‘cancer patient’ was an accurate descriptive in that time. There were few cancer survivors. A person with a cancer diagnosis was without choice except to submit oneself to the guidance of a doctor. Little to no information was available and therefore anyone with a diagnosis of cancer could be correctly labeled a“cancer patient” because many of these patients would not experience life after cancer. In the 1980’s, with the rise of technology, came effective imaging and screening for cancer. For the first time, the death rate of cancer patients began to decline and a scientist spoke about “cancer survivors.” The new term caught on because there was a new hope for cancer patients, the hope of survival.
Neither of these terms accurately describe a person impacted by cancer today. By definition ‘patient’ is an individual who submits his/herself or is acted upon by a physician. Though this may have been accurate 20 years ago, it no longer is an accurate description of cancer treatment. Presently, within hours or days of receiving the news of a diagnosis of cancer, one is given treatment choices and urged to make significant treatment decisions, immediately. I have personally known multiple individuals who were given the choice of which treatment to receive first: chemo or surgery. The implications of such a decision are significant, yet as a newly diagnosed patient, such a choice is often decided by when it would be convenient to be sick for 3-6 months. In the moments after diagnosis, most of us have no idea what type of questions to ask to help make such choices, and usually, no one is there to help guide us. Furthermore, studies show that for the newly diagnosed, the fear that fills the mind minimizes decision-making skills and limits one’s ability to process information around such stressful decisions.
But this example shows how those impacted by cancer design their own treatment choices, even within minutes of a new diagnosis. Once an individual is diagnosed with cancer and moves beyond the initial shock, s/he will soon learn of a plethora of treatment paths available. Talking with other individuals impacted by cancer or researching treatment plans from physicians around the world, an individual newly diagnosed with cancer can soon become empowered with a variety of treatments available. Cancer treatment is a dynamic process, a two-way discussion, and there is no expectation of quiet submission.
Next, look at the term ‘cancer survivor’ and the implications for a person impacted by cancer today. Until a cure/vaccine is the typical treatment for every individual impacted by cancer, there is a large population of people who question the label ‘cancer survivor.’ Today, many cancer treatments simply postpone cancer’s impact on lives. In some situations, treatments themselves may kill the current threat of cancer in a body but will, in fact, create cancer over the following 10-15 years. Other treatments may simply push cancer back, to a level where it can no longer be detected, only to be found at a later date. Today’s label of ‘cancer survivor’ is misleading and inaccurate. Those impacted by cancer long for the day when every individual who receives a cancer treatment will be called a ‘true survivor,’ not simply living for a 5-year benchmark but living long and full lives without fear of cancer’s return.
We are living in an era different than those that created the labels of ‘cancer patient’ and ‘cancer survivor.’ Today there is a whisper of a cure. Every individual impacted by cancer sits on the edge of their seat, thinking, the next big breakthrough could save my life, and so I will combine knowledge and wisdom and push myself so that I may be standing when that breakthrough comes for me. It is a new era for the community impacted by cancer and it is time for a new identifying term.
In this age of breakthrough much attention is placed on fundraising and on the large research entities’ race to glory. In the excitement, though, we have forgotten that for every medical breakthrough during these last twenty years, there have been thousands of engaged patients who chose to participate in clinical trials, risking their lives for a cure. In this breakthrough era those affected by cancer continue to die from treatments .In fact, they must. Someone must provide the data. Someone must be resolute enough to present his/herself to try what has not been tried before. Physicians and researchers cannot change treatment norms without participants in their studies. Individuals affected by cancer must risk his/her life every day in pursuit of a breakthrough, in pursuit of a cure.
Yet when and where have we ever celebrated their courage? On a t-shirt? On a hat? With a color? As a young adult living with stage four breast cancer, I must say I have never felt more alone than in the month of October when stores turn suddenly pink. There is no celebration of me. There is no mention of individuals impacted by cancer. There is no face attached to the sales.There is only one marketing ploy after another that feels completely disconnected from the people it says ‘pink’ represents.
So how, as a society, do we recognize the courage and sacrifice of hundreds of thousands of individuals living among us with cancer? While they wait for a cure, those impacted by cancer offer up their lives in pursuit of a medical breakthrough. It is their strength that overcomes the odds to reveal what is possible. Those impacted by cancer are the driving force of medical change. They are the breakthrough. So instead of labeling them as ‘patient’ or ‘survivor’, it is time to acknowledge their place in finding the solution to cancer. Progress cannot occur without them.
I am not an unengaged patient. I am reading the research. I am designing my own treatment plan. I am changing the statistics. I am living longer. I am not yet a ‘true survivor,’but I am a partner in breakthrough.