Denial, Misdiagnosis, and the “Big C"

I spent today cleaning my house, my mind constantly turning back to the news that Chadwick Boseman, at age 43, died yesterday of colorectal cancer. His passing was shocking because it seems so nonsensical, practically absurd. Black Panther only came out two years ago—how is it possible that the superhero on the screen is dead from a disease that normally affects people in their 60s and 70s?

Moreover, it is now clear that Boseman likely knew he had cancer when he starred in that role, a role which seemed to shift his career into a different gear, that of the rarefied air that accompanies genuine celebrity. We mourn what he gave us as much as we mourn what could have, what “should have,” been.

Some outlets point out that he had cancer during that role (he was diagnosed sometime in 2016), but I can tell you that there is a big difference between having cancer and knowing you have cancer.

I can tell you this because I was also diagnosed with colorectal cancer in 2016. Four years ago, August 2016, almost exactly to the day. On Monday this week I went for my annual CT scans, which I have to see if the cancer has returned, metastasized to my lungs or liver or some other vital organ. On Tuesday I got the wonderful news that my status is unchanged—NED: No Evidence of Disease. And on Friday, Boseman, a fellow traveler in the world of cancer that I didn’t know was there, passed away.

And I am still here. And it is challenging to name the emotions that I feel when I think about that.

Psycho-oncology is an interdisciplinary field that deals with the emotional, behavioral and social aspects of cancer, both during its acute treatment phase and during post-treatment surveillance (I don’t like to use the term “survivor” but people who do are generally referring to this phase). It is a remarkable field for many reasons. We don’t talk about “psycho-cardiology” for people who have lived through a heart attack, or “psycho-diabetology” for people who are living with diabetes, even though symptoms of depression and anxiety are very common among people with both of those conditions.

We talk of psycho-oncology because cancer is terrifying in a way that few other diseases are in our times: It is “the emperor of all maladies.” Only people who have been told “you have cancer” can truly understand what is underneath that phrase. Like realizing that your life is starting to count down, rather than counting up. I recall feeling “foolish” (I don’t know a better word to describe the sensation) when I heard those three words, overcome with a nagging sensation that someone had told me, at some point, to pay attention to my time because “the clock was ticking,” but that I had ignored or forgotten their warning. And now it was time to pay the piper.

That feeling of foolishness was heightened because I, like many young adults diagnosed with colorectal cancer, was symptomatic when I was diagnosed. Often (but not always) if someone has symptoms, it means that the cancer is of a more advanced stage. This is why we do screenings (mammograms, colonoscopies, etc.) of asymptomatic people: the goal is to identify cancers at an early stage where treatment is more likely to be curative. It doesn’t always work that way, of course, but that is the logic.

And not only was I symptomatic, I had been misdiagnosed for almost a full year when I finally got the news.

How did that happen? I have a doctorate in public health, the best health insurance money can buy, and all the privilege that comes from being a white woman in America.

When my symptoms started, I did what most people do: I Googled them. And then I made an appointment with my doctor, whom I was able to see just a couple of weeks later. And during that appointment, I asked “Could this be cancer?” And still, it was 11 months until I had the scope that found the single, large, cancerous polyp inside me.

In my understanding of what happened, this misdiagnosis happened because of a “co-conspiracy” between me and my primary care doctor. My part of the conspiracy was that I was in denial and terrified that there could be something seriously wrong with me, and I was looking for some external validation (that is, the opinion of a medical expert) that there was nothing to worry about, because that was what I wanted: I wanted to be healthy. I looked healthy, didn't I?

And that is where my doctor’s part of the conspiracy came in. He saw a 36-year-old woman with an unremarkable medical history sitting across from him, sobbing with fear over some unusual GI symptoms. A woman that he only saw once a year, if that, because her medical history was so unremarkable that she rarely had cause to see him. He asked many questions: Did they tend to happen more in the evening? Had I been under any unusual stress lately? Yes, I suppose they did. Yes, I suppose I had. But still … shouldn’t I get a scope, just to check things out to be sure?

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No, according to my doctor. A scope was unnecessary. I was “far too young” to have colorectal cancer. It was probably hemorrhoids or some other benign yet utterly embarrassing GI thing like IBS. He told me to change my diet and take a fiber supplement. If things got worse, come back to see him.

And why would this doctor, a senior internist at a major academic medical center, conspire with me? I can’t answer that question fully, of course, but I feel that the fact that I was young, female, “healthy looking,” and emotional about the situation led him to downplay the seriousness of what I was telling him. Doctor-patient communication is a complex dance and we are still learning how verbal and non-verbal cues get interpreted, especially during brief encounters in high-stress, busy physician offices.

When I left his office I felt a strange combination of humiliation and relief. I felt ashamed to have taken up his time with such a ridiculous concern (More fiber—of course! Why didn’t I think of that?), and yet so grateful to have his blessing to do what my heart desired: to ignore my symptoms and go on living as though the clock was not ticking.

I now know that those feelings of embarrassment and denial, especially when it comes to “sensitive” topics like anything your GI system is responsible for, are very common among people who delay seeking treatment for colorectal cancer. And that doctors who tell their patients “not to worry” about their symptoms cause clinically significant delays in colorectal cancer diagnosis. And so perhaps psycho-oncology should extend to the pre-diagnosis phase of cancer: the emotional, social, and behavioral factors that shape getting to the right diagnosis as soon as possible.

But the real strength of psycho-oncology is recognizing the fact that *people live with cancer,* which is not the same as living *despite* cancer. Even for those of us fortunate to be NED, we live with cancer. We are shocked by Boseman's death in part because we now know that he was going through cancer treatments while filming movies that we love. But why is that shocking? Because he didn’t “look like the clock was ticking”? Perhaps he gave such moving performances *because* of his cancer, because he knew what all of us that have been told we have cancer know: that the clock is ticking. That there is nothing but the present. And that the most we can hope for in this life is to have a positive impact on the people we love.

Rest in power, Chadwick. Thank you for showing what it means to live with cancer.

And finally, a PSA: You know your body better than your doctor does. If something is not right, find a doctor who will take your concerns seriously. I have fired many doctors in my life, and the incredible ones I have now I will have with me until I die or they retire. But do not follow the siren song of “wellness” or related nonsense: that is an industry that will take every dime you have until you die, which studies have shown happens sooner for people who opt out of evidence-based cancer treatments in favor of solely pursuing “alternative treatments.”