Cancer 'Survivors': What's in A Word?

I never believed the old adage, “Sticks and stones may break my bones, but words will never break me.” I have been terribly hurt by words and have unfortunately uttered phrases I wished I could take back as soon as I said them. Words and language are very important.

However, I am a little — no, a lot – puzzled about the bantering around in the cancer community about what the word “survivor” means.

I was thrilled when the cancer center where I receive treatments decided to sponsor a “Gallery of Hope” for cancer survivors. The director said she called several people who said they were interested. A professional photographer took the pictures and a quote is written from each person. The pictures will be hung in a huge atrium overlooking where ground is to be broken in the fall for a brand-new cancer center.

I was distressed, however, when she stated several people had declined because they were still undergoing treatment and felt they could not be called survivors.

Wait — what?! I always have felt from the second we receive a diagnosis we are surviving. We put one foot in front of the other and moved on. I did feel I had not been through the trauma of some of my cohorts who faced surgery, radiation and mutilating treatments. When I gathered with others who accepted being in the Gallery of Hope, several of us confessed we felt this way. However, we all had our stories, our individual problems and agreed to participate, though we felt humbled. I realized personally that eight years is a long time to be on chemo, thus my story was unique, and so I went ahead and said yes.

I considered it truly sad that the term “survivor” connotates such different meanings to different people. I was concerned that some surviving members of the cancer community didn’t participate in this wonderful program because they hadn’t been “cured” or achieved NED (no evidence of disease).

Wikipedia says, “A cancer survivor is an individual who is considered a cancer survivor from the time of cancer diagnosis through the balance of his or her life.”

The National Coalition for Cancer Survivorship also defines it from the beginning of diagnosis to the balance of life, even if dying. Furthermore, NCCS also extends this term to family, friends and voluntary caregivers. MacMillan Cancer Support, on the other hand, excludes persons in the terminal phases of illness.

I’ll admit that “survivor” is a loaded term in the cancer community. In the breast cancer culture, it defines women who have had an emotional or physical trauma. Alternate terms are also used such as “alivers” and “thrivers” which emphasize living as well as possible. This terminology even extends to “previvers,” who have not been diagnosed, but survived a predisposition to cancer due to certain genetic mutations.

Rick Boulay is a gynecologic oncologist. He maintains a patient who has received a diagnosis is already a survivor. At the other end of the spectrum is Howard Wolinsky, who admits that survivor is a better term than the previously coined term of “victim”. Since he has had no treatments other than biopsies for surveillance of prostate cancer, he doesn’t feel he deserves to be called a survivor. In my book, going through biopsies and waiting for results is like having a Sword of Damocles hanging over one’s head, and is another method of surviving. But if he is uncomfortable with that term I can accept this.

I could go on and on with various articles, but I am going to state my own opinion here. Please, people — let’s find a middle ground.

Some of us older people remember in the world of disabilities when we called people who had a disability “handicapped.” The community of people with various disabilities was insulted, because the term came from handing out a cap for begging. So the term was changed (correctly so, I feel) to “a person with a disability,” emphasizing the person first and the disability second.

Another attempt was made to change the term to “physically challenged”. As a person with profound hearing loss, I truly thought this change was over the top. Let’s stick with the term disability and be done with it.

I don’t think patients with cancer should be called “victims”. However, to say someone diagnosed with cancer isn’t a survivor because they are undergoing treatment and not yet cured is not fair!

If people shy away from using this term, that is their choice. I do not want them to choose not to use it for the rest of us. Currently about 65% of adults diagnosed with cancer in the developed world between 2009 and 2015 are expected to live at least five years after the diagnosis, according to National Cancer Institute SEER statistics. They are all warriors. And this includes the family, friends and caregivers who do so much for us.

A dictionary definition of “survivor” is a “person who copes well with difficulties in their life.” Every single patient with cancer I know is coping in one way or another. It is not up to me to judge how well, because we all cope differently.

Call yourself whatever term you wish. Join or don’t join a group who call ourselves survivors. But — please – stop saying those of us who have not been cured of this insidious disease and still undergoing treatment aren’t surviving. Don’t make it sound like people feel they do not deserve to be in a Gallery of Hope because they are not cured. They are the epitome of hope! Just accept that every single patient, caregiver, family member and everyone touched by cancer is facing every morning with the challenge of trying to live the best life they can. We all have hope, which makes us the best survivors of all!