We hear terms like “cancer survivor” and “cancer survivorship” all the time but what do those terms actually mean? Do they mean someone who has had cancer, was cured, and is now cancer free? Do they mean someone who had cancer and is in remission? Or someone who is living with cancer? Turns out no one has a clue. People use these terms for however they see fit and without much consideration.
But... if you don’t know what a "cancer survivor" is and what it means to you, how do you know if you are one?
Before I can feel comfortable with any kind of label, I need to know as much about it as possible. I decided I needed to know more about cancer survivorship and what it means to be a survivor before I could decide if I am one - and YES, I tend to overthink everything! When it became clear that a simple Google search of "cancer survivor" didn't produce any meaningful insight into the real life application of the term, I decided to extend my research to people in the cancer community. I posted my question on various cancer forums to get some outside perspective, and I also asked people I know personally, such as friends, family and doctors.
WHAT DOES “CANCER SURVIVOR” MEAN TO YOU?
The responses flooded in. Turns out people are pretty eager to share what cancer survivorship means to them, especially if it means giving a fellow cancer fighter some perspective and support. Responses came from people living with cancer, people who are being monitored for recurrence, family members of people with cancer, and oncologists. Here are some of my favorite responses!
“To me, every day you live with cancer, you’re a survivor! Right now, I’m NED, no evidence of disease.”
– Two-time lung cancer survivor
“We will never be ‘cured’ just have to stay positive, live the best lives we can, ignore statistics and accept whatever unfolds. Is that a survivor? For me it is."
– Lung cancer survivor
“I’m not a fan of that term – but I do feel happy for others to use that term in the context of all they have been through and go through. They are warriors, thrivers, and survivors. I just feel so scared of the unpredictable nature of this beast, looming over, in between scans – maybe even years of no growth and then bam, it will appear :( "
– A mother of a 17 year old that had an astrocytoma
“I’m a survivor because I’m still in the present tense surviving terminal cancer. However, I understand that this will some day change. But until then, since I am able-bodied and living life to the fullest to the extent that I can, I am a survivor.”
– Diagnosed with Glioblastoma
“I think it can mean any of the things you list; I know it can make a lot of people feel better about the tough place they find themselves in, and I am all in favor of whatever helps trigger those positive feelings. Do I call myself a cancer survivor? No. But I don’t mind if someone else chooses to use that term about me.”
– Had a low grade oligodendroglioma removed in 1998, no reoccurrence
“I never refer to myself as a survivor (and I doubt that I ever will). I tell others that I am a brain cancer ‘patient’ or brain cancer ‘thriver.’ … I sometimes explain that I am a thriver because I am beating the life expectancy numbers. And because I still can function at about 75% after having 2 brain surgeries. I like using the word ‘patient’ since it connotes that the cancer itself and its treatment is currently active.”
– Brain cancer patient and thriver
“I very much disliked the term cancer survivor when I was diagnosed with GBM in October of 2016. How can I be a survivor when this diagnosis is terminal, I asked? Well, here I am 76 months later and I am still able to live a fulfilling life.”
– Diagnosed with GBM in 2016
“A cancer survivor is someone who has lived with cancer in the past or is living with cancer today.”
– Radiation Oncologist, Associate Professor of Radiation Oncology and Biomedical Engineering, Co-leader of the Sylvester Comprehensive Cancer Center Neuro-Oncology Site Disease Group
"A person that was able to stay alive during cancer, and is still alive now."
– My 9-year-old daughter
– My 11-year-old son
Let’s sum it up, shall we? Clearly, the phrase cancer survivor means different things to different people, but it is usually used as a general term describing someone who has had a diagnosis of cancer. This means that cancer survivorship starts at the time of diagnosis. This definition includes people who have no signs of cancer after finishing treatment (“NED”), people receiving extended treatment over a longer period of time to control the cancer or reduce risk of its return, and people with advanced cancer.
Interestingly, not everyone who has or has had cancer is comfortable using the term "cancer survivor." Some people prefer to refer to themselves as a “thriver” or “cancer patient,” or to just say they “had cancer in the past” or that they “are living with cancer.”
Personally, I find the term “cancer survivor” unnerving - and akin to that feeling of walking into a crowded room just to look down and realize you're naked - and I instinctually swallow hard when someone refers to me as such because it suggests that I’m done with cancer. Although I certainly pray that is the case, I can’t know for sure, and I live with the reality that tumor recurrence is possible. Also, slapping on a simple label like "cancer survivor" to describe where I've been, and attempt to label where I am now, feels too limiting and I never want to define myself in terms of my cancer. I prefer to say that “I had cancer," and if someone happens to call me a "cancer survivor" I’ll knock on wood and smile; however, it’s not a term I would use to describe myself.