Skin Cancer Prevention as a Negative?
The word “prevention” in skin cancer has fairly obvious connotations – to keep from getting, re-acquiring, or recurring a skin cancer diagnosis. I have always viewed this as a positive endeavor; most skin cancer patients (and cancer patients in general) are active in preventative measures because they don’t want to see others suffer how they or their loved ones have. It has always come from places of concern, care, altruism, and helping out those who will come after us. Or, so I thought.
How can "prevention" be a bad thing?
Then, on a social media melanoma group, a fellow patient posted his irritation with the use of “prevention.” A somewhat spirited conversation followed. I defended the use of the word and its importance in keeping kids from getting burnt and out of tanning beds; “skin cancer risk reduction” just didn’t have the same jolting reality that “Prevention – because one person dies from melanoma every hour” has. Several people joined parts of the conversation, a surprising number of them voicing frustration with the use of the word. I disagreed with their position (without, I hope/believe, invalidating their opinions), and left wondering who was “right,” or if we all might have been.
Pevention shouldn't cause shame
What struck me as the most common refrain from the “nay” group was their perception of THEIR specific cancer as something they could have been prevented but chose not to. Prevention for me has always been a forward-looking idea: keep myself from getting melanoma (again), keep my kids from getting it, help prevent others from getting it. While I have retroactively identified plenty of behavior that could have led to my initial melanoma diagnosis, I had never felt any sense of guilt by it, or for it. Heck, when talking about it as a melanoma advocate, I often jest that I am not a cancer specialist but just “some guy who spent too much time in the sun at the Jersey shore growing up.”
Pevention and advocacy go hand-in-hand
Words do matter, though, and the point was made that prevention means prevention, and not “risk reduction.” As much as I emphasized that “prevention” in the advocacy world was geared towards helping keep others from getting this disease, some of those living with it saw those same efforts as shaming, guilting, and victim-blaming. I didn’t have an answer, or even a good thought, for that perception, and NOT empathizing with my fellow “melahomies” bothered me.
United as skin cancer patients
Cancer patients are known for finding the many ties that bind us together despite differences in nearly every human variable – age, race, sex, orientation, socio-economic level, education...the list goes on. When a “cancer colleague” sees things SO much differently, it is cause for consideration. Consideration of the words used and how they are heard by those they may describe. Consideration of perception of responsibility and unintended consequences of trying to do good. Consideration of what it may feel like to be saddled with this disease through no fault of your own and hear the groups and people supporting you sound like they are instead casting blame.
I don’t have any issue with the word “prevention” in the context of cancer and understand full well that there are certain lifestyle and behavioral risk factors that affect the odds of a person developing cancer. I stand by posts that send a positive prevention message and would support those who read those messages differently in figuring out ways that messages can have more context without losing effectiveness. In the end, advocacy is about saving lives – the ones already on their cancer journey, and those not yet in our little club. The smaller we can make that second number, the smaller and better this cancer world will be. Let’s hope we find the right way(s) to say it.
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