Learning to live with cancer: Stop buying pink ribbons and join the American Cancer Society’s Prevention Study-3

Learning to live with cancer: Stop buying pink ribbons and join the American Cancer Society’s Prevention Study-3
“I won’t know for sure whether I am cured until I die of something else....”

Awareness campaigns–think Susan G. Komen–don’t cure cancer. A recent article by Peggy Orenstein in the New York Times suggests that these campaigns may do as much harm as good by over-simplifying the disease, creating fear, and spurring unnecessary treatment and screening. We need to stop buying pink ribbons and invest in something that can help us understand cancer better. One way to help–join the American Cancer Society’s Prevention Study-3.

Let’s start with the basics. Instead of looking for a cure for cancer, we need to find ways of treating it and ways of living with it. As Orenstein says, “I won’t know for sure whether I am cured until I die of something else….”

You’re only cured in retrospect. Those of us with cancer know that “No Evidence of Disease” is the best it gets. Once you’ve been diagnosed, life is about treatments and scans. If you’re lucky enough to get the NED, to be in remission, then life is about facing down the fear and anxiety of recurrence. If you’re unlucky, it’s much more complicated.

Even more fundamental, we need to invest money in research about prevention. We know very little about what causes cancer. Lifestyle choices such as smoking certainly contribute, but thousands of people die of cancer every year who have never smoked, who are thin, who run and eat well.

The American Cancer Society’s Prevention Study-3 is a rare research project aimed at understanding prevention.

The American Cancer Society’s Epidemiology Research Program is inviting men and women between the ages of 30 and 65 years who have no personal history of cancer to join this historic research study. The ultimate goal is to enroll at least 300,000 adults from various racial and ethnic backgrounds from across the U.S.

What about the kids, infants, toddlers? How much is environment at play, how are genes implicated?

Orenstein’s article suggests the value of shifting our metaphors. Instead of declaring war on cancer, perhaps we should improve the neighborhood in which cancer lives.

 Other researchers are excited about the prospect of fighting or preventing cancer by changing the “microenvironment” of the breast — the tissue surrounding a tumor that can stimulate or halt its growth. Susan Love likened it to the way living in a good or bad neighborhood might sway a potentially delinquent child. “It may well be,” she told me, “that by altering the ‘neighborhood,’ whether it’s the immune system or the local tissue, we can control or kill the cancer cells.”

And then there’s the pink ribbons, the false assumption that raising the profile of a disease improves survival rates. Orenstein argues that awareness has increased screening and improved early detection, while failing to improve survival rates.

Mammography finds many cancers that never need treating and that are, by definition, survivable. Meanwhile, some women with lethal disease may seem to live longer because their cancer was found earlier, but in truth, it’s only their awareness of themselves as ill that has been extended.

Increased screening has also caused thousands of women to undergo unnecessary treatments, some of them extreme.

Awareness campaigns have also created simplistic understandings of a very complex disease. Orenstein writes:

Yet all that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk.

My family and I will be walking together at the Chicago metro area Walk for Bladder Cancer on Saturday morning. I’d really like for hundreds or thousands of people to show up and walk and to donate money to cancer research.

yellow wrist band

I’d even consider getting a (wait for it) yellow ribbon and yellow wrist band (yes, yellow, you know, like the color of pee) except that they’re the color of pee and they make me think of Lance Armstrong. I’m a hardcore fan of Greg Lemond, and I do just about everything I can to avoid thinking about Lance Armstrong.

I’ll wear the t-shirt and walk the walk and be the “cancer survivor” because I need to do something. I want bladder cancer to be seen and heard. I want to be in a group of people who are all taking bladder cancer seriously.

I’ll walk that walk with my family because it will make me feel better. But, I also think that the t-shirts and the ribbons and the wrist bands and the entire feel-better industry of the “cancer awareness” movement are a waste of money.

If you’re interested in participating in the the ACS research project, go here.  For the full article by Peggy Orenstein, click here. For details about the May 4th Walk for Bladder Cancer in Chicago, see this site.



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