Last week I was in a discussion and had the privilege of having Stacey remind me of the importance of our words. I had made a comment about moving from cancer centers to prevention centers, and Stacey reminded me that “prevention” was the wrong word. I thanked her for reminding me the importance of the words we choose. I also then asked her to allow me to repost an article she originally published on December 11, 2013. (Original link here)
Despite maintaining a healthy diet and active lifestyle, Stacey Tinianov was diagnosed with breast cancer on May 30th, 2013, just six weeks after celebrating her 40th birthday.
Despite giving birth before age 30; despite nursing her two children; despite a lifetime of following the myriad of published “cancer prevention” techniques, she underwent a mastectomy on June 17th, 2013 and will begin breast reconstruction on January 17th, 2014.
Like many others who follow the rules and still find themselves with a cancer diagnosis, Stacey now bristles at the misuse of the phrase cancer prevention and aims to set the record straight.
This is Stacey’s story…
Prevention vs. Risk Reduction vs. Screening
After a series of particularly frustrating exchanges, I have decided it will take more than 140 characters to not only explain the distinction between prevention, risk reduction and screening in ALL cancers but to also explain why a distinction is so critical.
Prevention: definition 1. To keep from happening
- The only way to prevent breast cancer is to not have anybreast tissue.
- The only way to prevent lung cancer is to not have lungs.
- The only way to prevent skin cancer is to not have that useful covering over your flesh and bones.
You get the idea.
But wait! There’s this list you received from your doctor’s office, right? Certainly it’s titled something provocative like: “Prevent Breast Cancer” and includes some or all of the following:
- Eat a well-balanced, low-fat diet
- Exercise regularly
- Limit alcohol intake
- Maintain a healthy weight
- Annual mammograms beginning at age 40
Yeah. About that.
I did all those.
And I was diagnosed at age 40 with two tumors of invasive ductal carcinoma, diffuse DCIS and lymph node involvement in my left breast. Did I misunderstand the rules for preventing breast cancer and do something wrong? No. I didn’t. I tried to reduce my risk and it didn’t work. The above list may be a compilation of helpful hints but, even collectively, they do not prevent breast cancer, they help reduce risk.
Risk reduction in the spectrum of the healthcare industry attempts to lessen our chances of receiving a diagnosis by removing potential harmful exposures and/or behaviors from our lives and, in some cases, replacing them with behaviors that can help fend off disease.
To use skin cancer as an example, we can use sunblock liberally but we are merely attempting to reduce our risk. Skin cancer is still a possibility and a combination of exposure and genetics may render our efforts utterly useless.
Never-smokers without lung cancer who may feel they can cross malignant non-small cell carcinoma off their worry list should meet JanetFreeman who “never smoked anything except a salmon.”
And there are tens of thousands more who followed the list of “prevention” tactics but were diagnosed anyway. Specifically, even if you are a never smoker, you may still have some of the following risk factors for lung cancer:
- Exposure to radon
- Exposure to air pollution
- Exposure to second-hand smoke
- Exposure to asbestos
- Exposure to carcinogens we don’t even know about yet
- Exposure to previous cancer treatments
- Genetic predisposition to lung cancer
Risk reduction is limiting exposure to the above but does not guarantee prevention. And a genetic predisposition is hard to shy away from.
If we refer back to the sage if woefully mis-titled “Prevent Breast Cancer” document above, I’d like to call out the last ‘prevention technique’ – the oft-touted annual mammogram.
People. People. People. Regular mammograms don’t PREVENT breast cancer OR reduce risk. EVER.
Mammograms are screening tools. Regular screening is encouraged so anomalies can be found as early as possible, be treated as quickly as possible and, hopefully, result in a better longer term outcome.
DISTINCTION is NOT A SEMANTICS ISSUE
This is not a tomato – tomato (c’mon, you’re supposed to pronounce those differently when you read them!) issue. Why is the terminology distinction important? Three reasons bubble to the top for me:
- Continued Diligence: Individuals must remain diligent in personal and professional screening even when they “do everything right” on the risk reduction list. Mammograms don’t “Save the ta-tas” they simply alert people as to whether or not their breasts are trying to kill them. I can personally attest to the fact that people who follow all the published rules for how to prevent breast cancer, and get a mammogram at 40, still get breast cancer.
- Removing Stigma and Eradicating Blame & Shame: According to anecdotal data, the most common question lung cancer patients field is, “How long did you smoke?” If you advertise risk reduction as prevention you are perpetuating a falsehood. Perpetuating the idea that cancers are preventable implies that, when a diagnosis is given, somebody did something WRONG.
- Redirecting Research Focus: While a list of ways to reduce risk for disease is helpful, such a list is not a magic bullet. Already genomic research is leading to personalized treatments. We need to expand efforts in this area. When the general public finally realizes that no one is “immune” to a cancer diagnosis, more focus can be applied in the appropriate areas.
Cancer sucks, no one ‘deserves’ it. Please don’t propagate a false sense of security or imply wrongdoing by patients who are diagnosed by claiming cancer is preventable. Please choose your words wisely.
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM or follow me on twitter @cancergeek
You can also reach Stacey on twitter as @coffeemommy
~CancerGeek#PtExp #PX #cancer #hcldr #hccosts #hcsm #stories #storytelling #lcsm #bcsm #hcmktg #mktg #storyteller #hcpt #consumerism #hcbiz #CX #UX