Banish “Survivor” from the Cancer Dialogue

What I have to say here goes against convention, but when we are dealing with trying to change the stigma and popular understanding of lung cancer there must be some changes in how we talk about ourselves and our conditions. One of the first things that we need to do is stop referring to ourselves as “survivors.” Regardless of the powerful badge that it is for many people, it positions the prospects of our disease in a very negative manner. While it may be an honest assessment that most lung cancer patients will ultimates succumb to their disease, the nature of story is an intrinsic part of how we experience our world and define our own outcomes. The power of narrative to define experience is ingrained in our DNA, a product of our very evolution; in discussions of the power of positive thought, we can see how our individual perspective may have a role in outcomes.

Positivity’s role in cancer treatment?

In reality, positivity is more about the will to continue or the ability to stay focused than it is about physiological change. When we believe we feel better, we truly do feel better, because feeling is a byproduct of our own perception. Empirically, studies repeatedly show that mental outlook does nothing to affect the power of treatments, but it does quite a lot to keep patients on treatments that are difficult to handle and it affords patients a better quality of life than those who approach treatment from a negative perspective. But the individual patient and the individual treatment are only small parts of the greater narrative surrounding lung cancer.

We deal with a negative stigma that influences everything from a patient’s willingness to get help to the amount of research funding made available for lung-specific cancers. Nothing good comes from feeding, even indirectly, into this particular storyline. While a good many lung cancer patients are current or former smokers, the percentages are shifting dramatically and it must be remembered that this is only one of many risk factors leading to the disease — a disease that no one asks for or deserves. And progressively it is a disease that patients should expect that they can live through. Even if the disease is quite advanced, the sheer number of new and viable treatments (many still off-label) that are coming out means that patients may be able to move from treatment to treatment for years to come. So if we expect to continue living, we are not “survivors.” We are simply living. As we should.

How do we define ‘survivor’?

A person who gets rear-ended in a parking lot does not usually claim she has survived a car wreck. But a body pulled unconscious but alive from a mangled steel cage off the side of a bridge, that person is a survivor of a car wreck. Passengers who hit some air turbulence mid-flight and bounce a few times on the tarmac do not wear the moniker of “survivor.” But when a plane goes down in the Potomac after a flock of geese jam the jet engines, those passengers can say have survived a plane crash as they file into their inflatable rafts. These distinctions make a difference. If everyone who was ever a passenger on a train claimed special “survivor” distinction for not having been derailed, it establishes the notion that trains are designed to kill you, that you should expect to die if you get on board.

Yes, booking a ticket on public transportation comes with some risk and a whole lot of trust in the pilot or conductor. And, yes, booking a ticket is a choice, which is quite unlike the receipt of a cancer diagnosis. But a good oncologist can pilot you through heavy weather, the rest of the medical team acting as good stewards along the way. As with everything in life, there is a certain amount of chance involved. We cannot plan effectively for every scenario or expect all outcomes to be equal. But we can begin from a place of trust and believe that, yes, we are going to make it through this journey. We can expect to get from Point A to Point B. And if we expect to get there, we are not “surviving” the process. We are just living through it.

“We are not surviving, we are living”

Maybe it’s hard. Maybe it even truly, completely sucks. Maybe we lose our hair or a lot of our weight or even some dignity along the way. Maybe we struggle and maybe we hate the experience and maybe, just maybe, we even think for a time that we cannot go on. But we do, mostly. We continue to trudge forward because there is something to believe in. There is a light at the end of the tunnel, however far off it seems. And as long as we are plodding toward that light, we are not surviving, we are living, we are continuing on.

And that is what I propose we present to the world. Even with No Evidence of Disease, most patients know that the threat of cancer never truly goes away. The risk hovers over us, but it does not prevent us from being a part of the world. I’m not a survivor. I expect to be alive. I expect to continue living. I’m just living with lung cancer.1

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