Learning from Karen Walsh

Karen Walsh is an actress, a mother, a friend, and a vibrant personality. Unfortunately, Karen is also fighting colon cancer. Shortly after Karen turned 40, she experienced stomach cramps. Upon visiting her doctor, she learned that she had stage IV colon cancer.

In June of 2016, Walsh spoke with the Huffington Post, saying, “I’m unfortunately inoperable because of the location of the tumors in my liver, so chemo right now is the only option for me.”

What is remarkable about Karen’s story is not that she is fighting colon cancer but how she is fighting colon cancer.

It started with selfies and soon became so much more.

Gathering her friends, family, and, occasionally, some celebrities, Karen has turned those chemotherapy sessions into fun occasions worth recording on Instagram. With the help of that crew, some amazing costumes, and a whole lot of creativity, Karen has created a platform for talking about colon cancer and her treatment therefore.

What’s more, Karen has become a passionate and vocal advocate for changes that need to be made in how we talk about colon cancer – particularly when we talk about colon cancer.

On the final day of the 2016 National Colorectal Cancer Round Table (NCCRT) / American Cancer Society (ACS)  meeting in Bethesda Maryland, Karen, the keynote speaker, delivered an engaging and heart-wrenching picture of the toll of what our founder refers to as EAO -CRC – Early Age Onset Colorectal Cancer.  The part that everyone heard loud and clear was one brave woman’s fight to normalize her life, her family’s life – to bring the creativity of theater and a team to shine light on what is most often a very dark place- treatment for advanced stage cancer.

Yet somehow this vibrant, outgoing, emotive and communicative woman who spends her career on the stage entertaining in what may be one of the most challenging careers – a Broadway actress in a hit show – struck a quite different tone than just another survivor telling their story IF ANYONE was really listening.

In a most theatrical way, with a lower tone of voice designed to bring in people’s attention, Karen  called out the colorectal cancer community  – discreetly, respectfully and diplomatically – about what she perceived had been left out of her shared experience

We’re paraphrasing, thought not nearly as eloquently, but Karen said, “I never knew about the symptoms…, I never knew a family history was important, but once I did find out and asked my family both my parents had polyps and my grandmother has actually had CRC.  I know that you can’t screen everyone who is younger than 50 but what might have been different if I had only known earlier?”

Did anyone else at the conference hear her? Maybe not.

But clearly she heard the status quo line from the current mainstream strategy, which generally goes something like this:  “We can’t screen everyone early because of ………..”  and “If we inform people earlier they might undergo unnecessary………… with ……….costs and ……….complications”

You fill in the blanks.

We would all agree that inappropriate testing and screening is both ineffective and potentially harmful.  Yet, for far too long information, awareness, personal empowerment leading to ones’ own cancer prevention strategy has been wrongly embargoed.

Tragically, this embargo is contrary to our growing evidence-based understanding that our current strategy leaves too many out in the cold – people who are younger than age fifty, including those with a pertinent family history and those sporadic cases with NO family history and only symptom presentation.

The current communication strategy has also proven far less effective for those in their early 50s who are asymptomatic and at normal risk.

A Project supporter who works in real estate and is familiar with our on-time messaging focus described the current colon cancer communication strategy in terms of contract law. Let us explain:

  • Errors of COMISSION occur as a false statement that is purposefully utilized for the gain of the party making the claim. While this doesn’t literally apply in this situation – no one is deliberately misleading people about screening – we are not necessarily providing ALL of the facts or even the BEST of facts as we know them. To be sure, at the macro, National Colorectal Cancer Roundtable/American Cancer Society level, no one in the world has done a better job of telling the story of getting colon cancer screening at age 50.  But that’s the easy part.
  • The other more subtle error is the error of OMISSION, where a failure to notify one’s partner (in negotiation or a contract) of facts that may have affect the “buyer’s” – for lack of a better term, decision regarding the issue on the table.  On this one, errrrrrrrrr, ehhhhhhh, ummmmm, ahhhhh.  You get it. 1 in 7 colon cancer diagnoses are in people under the age of 50 – people like Karen Walsh.

What this means is that we, the colon and colorectal cancer community have been committing errors of omission by not emphasizing that a screening age of 50 is not necessarily enough. If you have a family history or polyps, for example, your screening age may be earlier.

We want to pivot our current position to an opportunity for inclusion – evidence based of course.

This week, we’ll be highlighting how we propose to make this happen – taking each day to learn a little more about a sound, evidence-based course of action so that people like Karen feel like they have all the facts, symptoms, family history, etc. – BEFORE they are diagnosed and when prevention is still possible.

Stay tuned!