Emaciated figures staggering through the gates of a concentration camp.
Soaked shadows shivering in the icy seas around a shattered ship.
These may be the first images you think of when you hear the word survivor. Or maybe your first thought is of women in pink T-shirts smiling for a camera at a cancer fundraiser.
Survivor is commonly used these days to name people who are alive after a cancer diagnosis, but not everyone likes the term. Dr. Susan Love, best known for her work as a breast cancer surgeon and the author of Dr. Susan Love’s Breast Book, was diagnosed with leukemia in 2012. Now about a year out of treatment, she writes about her discomfort with the word in a recent blog, "Don’t Call Me a Survivor."
She writes, "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 . . . the term survivor feels misplaced."
Her blog elicited a wave of responses, most from people who also do not like being called survivors. Why wouldn’t someone like this word?
"I haven’t really survived yet." When I was working at the survivors’ table at a fund-raising walk handing out bags with information and goodies, several women who approached the table in headscarves asked if the bags were for them. Newly diagnosed, they didn’t see themselves as survivors. They saw themselves as sick people in treatment. My reassurances that they were already survivors didn’t change the scared expressions on their faces.
One of my friends says, "If you make it to lunch on the day of your diagnosis, you are a survivor" But not everyone can see herself that way. Overwhelmed with anxiety, some people see survivorship as some distant shore when cancer will be behind them.
To go back to my shipwreck analogy, everyone clinging to a bit of wreckage in the sea is a survivor as long as they are alive. Some people in that shipwreck died right away. Not everyone floating in the ocean will be rescued, but at any given point, all the people who are still alive are survivors. That’s how it seems to me, but I can understand how the folks who have just been thrown into icy water, aren’t ready to call themselves survivors until the rescue is accomplished.
**"Survivor is such a wimpy word. I’m a warrior who beat cancer." ** Those images of people rescued from a concentration camp or from a wreck that are part of our associations with the word survivor are another reason some people don’t like it. The word seems too passive to them. They picture themselves as active participants in their cure. They have battled cancer and won. They prefer to call themselves cancer thrivers or conquerors or warriors.
Dr. Love concludes her blog, "**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!"
For some, this point of view seems too negative. They see cancer as a disease they have beaten, an event in their past. They have moved on with their lives.
But cancer is a wily beast. For folks like me who had a very high recurrence risk, it seems to be tempting fate to talk about cancer in the past tense. I remember how tricky the verbs were for me when I finished treatment for inflammatory breast cancer (IBC). I couldn’t bring myself to say, "I had cancer"; yet I didn’t want to say, "I have cancer." No one knew. Just because there was no detectible cancer didn’t mean it wasn’t there biding its time. But it was also possible that it was indeed gone.
One of my friends, whose doctor told her that he had successfully treated her Stage I breast cancer, recurred ten years after her diagnosis, about the time my own treatment ended. When she developed a cough, she assumed it was a persistent chest cold and didn’t see the doctor right away. She lived three years after she moved from being a "cured Stage I survivor" to being a Stage IV patient. Could it be that the word "survivor" lulled her into complacency?
"**I’m not a survivor. I’m Stage IV, and this cancer is going to kill me." ** These days people with metastatic breast cancer (MBC) may live for years. Knowing how to talk about their disease to their family and friends can be difficult. Cancer is definitely a present tense verb for them, and barring a huge breakthrough in treatments, they expect that they will eventually die from MBC. Many undergo difficult treatments to buy more months and years with their families. For some of them survivor is just too difficult a word when they are facing death.
However, the comments I found most difficult to read in response to Dr. Love’s blog were the ones from women with MBC who have found themselves excluded from survivor events because they are not currently cured. They are justifiably angry at the happy face of cancer survivorship presented by some organizations. Some have actually been told that their presence will be too depressing for newly diagnosed women. It seems to me that someone who has lived with MBC for two, five, or even 10 years is truly a survivor, and I am furious that anyone in the cancer community would push them out, especially since they represent 30% of those diagnosed with breast cancer.
"The word survivor makes me uncomfortable, but I don’t know of a word that describes us." Words matter. Each word carries a load of emotional freight. Each suggested substitution brings objections from others: too passive, too warlike, not accurate enough, not inclusive enough. No one has quite come up with a word for everyone in the cancer community. We are probably too big a group for one word to apply, but there is a need for a word.
Right under Dr. Love’s blog about the problems with the word survivor is a headline asking for help with a research project from “breast cancer survivors.” For now that’s the best word we have. I understand why some people have negative associations with the word, but I personally don’t object to it. When I describe myself, I usually say I was diagnosed with IBC in 1998, but now I’m doing fine. When people ask me if I’m cancer-free, I’ll explain that all my labs show no evidence of disease.
If they call me a survivor, I smile.
Love, Susan. “Don’t Call Me a Survivor.” Act with Love Blog. Dr. Susan Love Research Foundation, 6 Aug. 2013. Web. 16 Aug. 2013. https://blog.dslrf.org/?p=1598.
Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.