The language used to talk about cancer often focuses on battle words – those who are cured “won” or “survived,” while those who die from cancer “lost” their “fight.” But is cancer really something to be won or lost?
Young adults with cancer discussed these phrases and others during the recent Young Adult Cancer Conference hosted by the Young Adult Program at Dana-Farber. Labeling your cancer, and yourself as a patient or survivor, is often one of the most challenging aspects of the cancer experience, they said.
Loved ones and those without cancer often consider cancer patients “heroes,” but, as one young adult put it, “I don’t feel very heroic when I’m going through treatment; I just take my medications and do what I’m told to do.” Another young woman added: “The intention is, ‘you inspire me; it inspires me to watch you survive,’ but they don’t do a good job at expressing that.” Being labeled as a hero may put undue pressure on patients or make them feel like they aren’t allowed to look sick or express negative emotions about their experience.
For many patients, there are also conflicting feelings about the term “survivor.” Some patients feel it is acceptable to use the word within a group of your peers who are also experiencing cancer. But when people who are not patients use the term, it can create a sense of “survivor’s guilt” for those who have had friends die from their disease. The word can also create anxiety for those who were cured or have no evidence of disease and may feel they have to act a certain way.
“I feel like the term survivor is so confusing,” remarked one young adult. “Dying isn’t losing; cancer isn’t a game.”
These terms become even more complicated for those with cancers considered to be chronic, or for individuals whose cancer was cured or has gone into remission, but who still feel the emotional impact of the cancer experience.
What do you think of the terms usually associated with cancer? What words do you prefer to use for someone coping with cancer or who has finished treatment? Let us know in the comments section below.
I am 10 years past a Stage I metastatic breast cancer treated with lumpectomy and radiation and now three months past a Stage 1C1 clear cell ovarian cancer treated with hysterectomy and three cycles of chemotherapy. I will only have “survived” either of these posthumously-because I die of something else. So this word has little use to me. It also implies that the goal is mere continued existence. In retrospect the treatment for my first cancer was a walk in the park compared to the recent recovery from abdominal surgery and debility of chemotherapy. The neuralgia and potentially long term peripheral neuropathy from chemo (one of the best kept secrets by the cancer treatment industry) made me realize how lucky I was to have a doctor who did his homework. He said the evidence does not support an increase in benefit of more than three chemo cycles. “And I know how much running means to you and I wouldn’t want you to lose that,” he said. Having a body you actually want to live in after treatment should be part of the discussion for every patient. More often through treatment I have felt the real “battle” is not with the cancer but with those who want to decide for me what I should be willing to suffer or give up to continue my existence and be one of their “heroes.”
My 28 year-old brother died of melanoma. My 33 year-old brother died of sarcoma. His five-year old son died of leukemia. My 70 year-old non-smoking mother died of lung cancer. They all suffered tremendously because of their diseases. Since their passing, my two sisters and I have all been treated for breast cancer. Another brother for thyroid cancer. Are we surivors? Sure, if we also want to call ourselves flu survivors. How ridiculous! Our diseases were not terminal. We have NO IDEA what our siblings, nephew, parent or anyone else claimed by cancer endured. For this reason, I would never call myself a cancer survivor, nor would they, and when someone else identifies that way, I inwardly roll my eyes. If we are still living, it’s because the disease was survivable, not because we are special. All cancers are not created equal.
I think it’s a great article that asks a question, but it doesn’t seem anyone actually offered a solution. I am still looking for a more positive way to refer to it than “battling cancer” or “fighting against cancer.” Anyone out there with some ideas?