For years, we have talked about “living with and beyond cancer.” That’s what survivorship is about: finding a new path forward after a diagnosis—during treatment if it’s right for you, and afterward—fully embracing courage and hope. Discovering community, making good choices, seeking joy. Truly living life.
It may be helpful to consider that some people without cancer think of themselves as survivors too. Whether the challenge is moving ahead after a sexual assault, embracing new options after an abusive relationship, or shouldering a difficult diagnosis, many of us are in survivorship. There’s a whole world of people who no longer see themselves as “patients” or “victims.” We are survivors who honor our experience and celebrate our strength.
The “survivor” term was first applied to people with cancer starting in the mid 1980’s, according to Dr. Wendy Harpham, an internist, survivor, and author who shares “healing hope.” She acknowledges that not everyone loves the label, though, even when they understand it was coined with good intentions. If this is how you feel, you may want to read her overview in a recent issue of the Oncology Times.
From the word “survivor,” comes “survivorship,” the state or condition of being a survivor. Whether you feel “survivorship” effectively describes your situation or not, it’s good to be acquainted with all it can mean in the world of oncology.
The National Cancer Institute at the National Institutes of Health defines survivorship in the broadest possible way. The organization asserts that someone with cancer is in survivorship the moment they are diagnosed. Survivorship lasts forever, and encompasses all aspects of the experience:
Dr. Harpham’s article points out that moving to the term “survivor” has helped the world of medicine view those living with cancer as “whole patients,” rather than people with a disease. Recognizing this, and understanding how aspects of survivorship are interrelated, your medical team will want to know much more than doctors tended to concern themselves with long ago. They should be aware of your support network, what kind of resources you have access to and so on, not just what’s happening with your cancer.
The change in terms also encourages medical providers to see the cancer experience as a continuum consisting of the time before, during, and after diagnosis. It opens the door for you to discuss, for example, problems you may face after treatment is completed and late effects of your care.
This is one important way cancer care has changed for the better. The National Cancer Institute outlines a variety of challenges people may encounter after treatment is over and has helpful articles to read. One you might consider, especially if you’re nearing the conclusion of active care, is Questions to Ask Your Doctor When You Have Finished Treatment.
Differences in Usage
It probably won’t surprise you to find out that the way these terms are used in the cancer community is not perfectly consistent. Some organizations use “survivor” to apply to family, friends, and caregivers in addition to the person with cancer. Medical professionals usually reserve the term for just the person they’re treating, however, according to Dr. Harpham.
When it comes to “survivorship,” most groups assert that the term applies to the entire cancer experience. Some doctors use it to describe just the period after treatment. You can decide how you feel for yourself, but it’s good to know there are differences in usage and clarify when needed.
It’s Up to You
And that’s really the bottom line: deciding how you feel about these terms for yourself, and how they describe, or not, your own life. If you don’t feel “survivor” is a good fit, Dr. Harpham suggests you could consider words like “thriver,” “fighter,” or “veteran.” If you don’t particularly like “survivorship,” you might go with “journey” as many people do. If that word sounds overused, the simple “experience” might do.
As you choose the words that help you claim your reality, keep a couple of points in mind. In certain situations, it’s a good idea to spell out exactly what caregivers mean by the terms they use. Do not be hesitant to ask. Finally, even if “survivor” and “survivorship” don’t ring true for you, know that they are signs the community has come a long way from seeing you as a victim and viewing your experience through a narrow lens.
That’s a good thing.