What You Must Be Thinking

February 23, 2010

I jumped out of my chair last week, and I am about to do something I rarely do. I like to think my regular blogs are something like the National Public Radio show, “This American Life.” If you know the show, and depending on how you feel about it, you are saying one of two things to yourself right now. Option one: Wow, is he arrogant or what? Option two: Well, that’s a bit self-deprecating – his writing isn’t THAT bad. And oh yes, if you are my mother and you are reading this (and yes she is most definitely reading this), you are thinking option three: Nothing could ever compare to your blogging, Christian!

For those of you who don’t know the show, it is an hour-long show on NPR that takes a theme and tells three or four true (well mostly true) stories using that theme. The stories can be wildly different, but they all carry the theme of the show in one way or another. I try to do something similar. I try to stick with a survivorship theme – introduce it, expand on it from different angles of research and developments in the world of survivorship, and wrap it up. But ever-so-often, “This American Life” takes an entire show to tell one story – like the time they told the story of one man's 30 year fascination with an abandoned house in New Hampshire. Today, I am writing a similar blog; I am dedicating the entire blog to one article I read. I feel it necessary because I jumped out of my chair last week.

I was thumbing through the electronic publication of one of the premier cancer research journals, Cancer Epidemiology Biomarkers and Prevention. The journal published an article that cuts to the core of survivorship and everything we do and stand for at the CT Challenge – in a good way! Before I even tell you the title, I am going to quote the authors directly from the abstract.

“Accurate breast cancer recurrence risk perceptions might motivate health-promoting behaviors and alleviate undue anxiety. Although a few studies have examined early-stage breast cancer survivors' perceived risk of recurrence, none have assessed the accuracy of survivors' perceived risk of recurrence.” – From Accuracy of Perceived Risk of Recurrence Among Patients With Early-Stage Breast Cancer.

In case you missed it in the characteristically jargony language of this academic publication, the authors are hypothesizing that survivors (specifically breast cancer survivors in this study) may not fully understand the risk they have of recurrent cancer, and if they did understand that risk, they might be more motivated to live healthier lives. This is one of key objectives at the CT Challenge. We seek to inform survivors with the very basics of survivorship and motivate them to get more in-depth information from the experts and to live healthier lives armed with their knowledge.

Here is what the researchers did: They interviewed survivors at 6 and 12 months after surgery to treat early stage (primary ductal) breast cancer to assess their perceived risks. Then they estimated each survivor’s individual risk profile based on evidence from clinical trials. Each survivor’s perceived risk was compared to the estimated risk and categorized as “Accurate,” “Overestimated,” “Underestimated,” or “Uncertain.”

Only 17% of the survivors accurately perceived their risk at the 6-month interview, and most of those same people also misperceived their risk at the 12-month interview. Women who were “non-white” and also had radiation were more likely to underestimate their risk. Women who reported anxiety and low social support were likely to overestimate their risk.

When I first read the study, I hoped to get an answer to this question: Do most survivors overestimate or underestimate their risk? However, that was not the result of the study. In fact, the results are even more telling. One way or another, 83% of breast cancer survivors misunderstand their risk at a critical stage of survivorship – the transition from active treatment to long-term survival. On one side, this misperception could cause extreme and unnecessary anxiety, yet on the other side, it could cause carelessness in health behavior. Each of these outcomes is damaging and simply not acceptable for the 12 million survivors in the country. This is even deeper when we consider that breast cancer is a disease, which enjoys lots of media play and relatively generous health communication. I would hypothesize that the misperception prevalence is higher still among other cancer (non-breast) survivors.

This is exactly why the CT Challenge exists. We are here to spread the word about cancer survivorship to reduce anxiety and improve healthy behavior. So what’s my advice? How am I fulfilling that mission right now?

I am begging you to be punctilious, meticulous, curious, and inquisitive. The only way for you to know what is right for you and for your survivorship is to be informed. I will close with more words from the study's authors, and I’m hoping you will take the hint.

"The accuracy of perceived risk may be increased by better physician-patient communications about their prognosis, provision of social support, and treatment for coexisting anxiety."

You can find the recently published article and much more on the journal’s website by clicking on this link.

Christian McEvoy, MPH, is the Director of Survivorship Information at the CT Challenge. You can reach him via email at christian@ctchallenge.org