Why We Can’t Talk About Cancer

The views expressed in this post are mine and mine alone and do not necessarily reflect those of any past nor present employers. Heck, I even have a whole disclaimer page.

Cancer communications – it’s hard

I have done lots of types of challenging communications work in my professional life: selling brands and ideas in the agency world, doing communications for the Securities and Exchange Commission during and after the financial crisis of 2008, for a Chinese conglomerate that went on to become the largest IPO in history, and now, a few years, work in cancer communications.

Cancer is, by far, the most challenging professional communications scenario I have ever faced. Communicating about Bernie Madoff was a piece of cake compared to cancer communications. Here’s why:

I learned this valuable lesson back in 2004 while in the chemo ward at Georgetown Lombardi Hospital with my mother, who was receiving treatment. For those of you who have been through it, you know that cancer treatment ultimately comes down to a lot of sitting around and waiting – and waiting. One day (while sitting around and waiting), I was engaged in conversation with a woman who was in one of the chemo chairs next to my mother and she told me one sentence that has stuck with me throughout my time doing cancer communications:

“Once the doctor says the words ‘You have cancer,’ you don’t hear anything else.”

I could go on about the need for a good a note-taking caregiver, but there are other resources for that. The point that I want to make is the difficulty of communicating about cancer. It’s complex, nuanced, can be confusing and misleading, yet there is more hope today than ever before. It’s hard.

The “C” word

For many people, in addition to freezing up when they hear the word “cancer,” there is still a stigma around simply having cancer, let alone talking about it. We are not that far removed from the days in which you hid grandma in the back room because of the shame of the disease, and heaven forbid you get something with embarrassing undertones, like Michael Douglas’s throat cancer or something like cervical or penile cancer.

Yet there are many people like my friends, Janet Freeman-Daily, who do a great job of helping to remove the stigma around cancer, in Janet’s case, lung cancer (making the point that not everyone who gets lung cancer smoked).  There is also my friend Jennifer Stauss, described in the Huffington Post as,The Inspiring Jennifer Windrum and the W.T.F. Campaign.”  There is still much work to be done, however, to remove the stigma of simply having one normal cell decide it wants to become a cancer cell.

Are we at war?

I’m not sure that the imagery and well-intentioned metaphors surrounding the fight against cancer convey a meaning that presents where we are in medicine.  For example, in 1971, then President Nixon (yeah, that guy) signed a bill marking the “War on Cancer.” Recently, Vice President Biden created a task force that is called the “Cancer Moonshot.” These were and are well intentioned and much needed metaphors, but as a communicator, I’m not sure that the words match the content. In a “war,” you have an enemy whom you are trying to kill. Is the enemy cancer cells? Who is the army? The government? Pharma? Academia? All three? In our first real Moonshot, we got to the moon and came back – several times. The lunar project was a success, and had a beginning, middle and an end. Cancer research and treatment does not.

There is no timeline for the “battle”

While many incredibly dedicated researchers (some of which I have the privilege of working with daily) do amazing work at cutting edge cancer treatment like immunotherapy, this also muddles the communications message, especially for those who have an advanced cancer. The Duke University glioblastoma vaccine story on “60 Minutes” last year presented some potentially good news, but it is so early on in the clinical trial process that we simply cannot know what will happen – and the sample size was only 22 patients. Does it present promise? Perhaps. Is it at a point at which it deserves national hype? No – because it’s simply too early in the process.

Most people don’t consume “complex”

The hard part about hearing things like “a billion dollars” and the word “cure” is that cancer is not that simple. It is highly complex. We have come to understand that cancer is a genetic disease. There are many types of cancer and although we make daily progress, it is a actually a series of insidious illnesses. You can knock back one type of cancer, but then the genes can mutate, become resistant to treatment, and you have to start all over again. And again.

People, especially those who are watching loved ones suffer through cancer, want a FIX NOW, a simple slogan, a simple answer, a magic bullet. Most people even give me a quizzical look when I tell them that cancer is not just one disease. I believe that the media (both traditional and social) have taught us to learn in sound bites and something as complex and hard to understand as cancer research, diagnosis and treatment(s) just doesn’t add up.  “No blood for oil” is more easily remembered than a complicated argument as to why we evicted Saddam Hussein from Kuwait in 1991.

Bumper sticker statements can much more memorable than nuanced, complex answers, even if the issue is highly complex. This is a tremendous challenge for those of us who communicate about cancer-related issues.

There is hope in cancer research and treatment and additional funding is a wonderful thing. But in comparison, a mere eight years elapsed from President Kennedy’s “Moonshot” speech to the time that a man landed safely on the moon. We declared victory. We did it.   Boxed checked.

Take a look at the Food and Drug Administration’s explanation of how a drug goes from basic science, discovery and development to implementation and post-market safety monitoring.   MedicineNet says:

In the United States, it takes an average of 12 years for an experimental drug to travel from the laboratory to your medicine cabinet. That is, if it makes it [emphasis mine].

Combine this statistic with the complexity of cancer and the fact that only five in 5,000 drugs that enter preclinical testing progress to human testing (and that’s not even approval). That’s nuanced, complex and for many people, very hard to understand for a highly emotional issue. The laboratory portion alone can take 10 years or more. Yet this is part of the “war.” And you certainly can’t fit that on a bumper sticker.

Why communicating about cancer is so hard

Combine fear, emotion, hype, desperation, nuance, highly complex, scientific language, and differences in each and every single patients’ type of cancer, and you’ll find that it is very, very difficult to communicate the journey “to a cure” that so many people long for.

Like millions of people all over the world, I want resources, simple answers and a to declare “victory” on a horrible disease kills far too many people. My own mother died in April 2004 of non small-cell lung cancer. She was there as I took my first breath, and I was there as she took her last. But as a now cancer communicator, I know that the reality is just not that simple. Bumper sticker slogans are effective, but they don’t match the reality of what really happens in cancer research and treatment.

We are making tremendous progress, but you don’t “cure” cancer with a bumper sticker.

Mark

P.S.: Have I mentioned that the views expressed in this post are mine and mine alone? Good.

 

 

 

 

 

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Comments

  1. I could not agree more! I wrote my story about having vaginal leiomyosarcoma, in part, to reduce the shame people feel. http://sarcomaalliance.org/stories/suzie_siegel/

    One thing adding to the complexity these days is the notion that you get diagnosed, get treatment, and then either die or move on with your life. For many of us, however, our path is not linear. We deal with metastases and/or the late effects of treatments.

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