NPR is running a series called Living Cancer leading up to the upcoming PBS premier of Cancer: The Emperor of All Maladies. In case you didn’t know, I’ve had this highlighted on my calendar for months, as the book by Siddhartha Mukherjee is one of my favorites. In fact, I have two copies, so if you want to borrow one just speak up.

On yesterday’s program, they delved into the psychology of presenting patients with survival statistics. Dr. Tomer Levin is a psycho-oncologist at Memorial Sloan Kettering. He works with cancer patients and teaches doctors how to communicate with patients. While this story focuses mostly on grim prognoses, much of what I heard applied to my experience with diagnosis.

I saw three doctors during my drawn out diagnostic process and based on initial contacts, I had no faith in the first two. They both dropped the big C bomb on me and offered drastic next steps with no confidence that they had any idea what was going on, or further discussion at all. There was no context, no room for me to talk at all.

The third doctor sat with me at a round table, looked me in the eye, presented me with literature, academic explanations, and answered my questions for over an hour on her own time. When I asked about statistics, she gave me numbers and explained that statistics can’t predict an individual’s outcome.

Yes, we all get hung up in numbers because we crave certainty. All I wanted was for someone to tell me I was going to be fine. But the truth is that no one can say that because as trite as it may sound, anything can happen to you, to me, to anyone.

I think at the moment of diagnosis, it’s hard to have that kind of perspective. Rather than understanding the nuance of statistical probability and median survival times, we are more likely to believe we have just been given an expiration date.

As this story points out:

Anxiety makes it difficult to remember details and the worse the prognosis, the less the patient tends to remember. Recent studies have found that cancer patients retain less than half of what their doctors tell them.

That’s why I think it’s crucial for doctors to continue to engage on the topic. Think of it like this: in a time of drought the soil becomes rock hard. If a flooding rain comes, most of the water runs off. A gentle shower give the ground time to soften, to absorb what it needs.

Part of what we need too, is room for the shadow. I consider myself a can-do type of gal, but that doesn’t mean that I skip through life with a lollipop and a pink boa.

I can’t stress this enough: dark thoughts and low moments are normal. To be expected. Inevitable.

From the story:

But many people avoid preparing for the worst-case scenario, Levin says, “because the worst-case scenario is the scariest.” Sometimes a family’s desire to “think positive” can make people reluctant to bring up death or dying. “And the end result is that the patient is left alone with his fear of dying and he can’t speak to anyone about it.”

A positive attitude can do all kinds of great things. It can’t, however, cure cancer.

Gayle Sulik explains the tyranny of positive thinking much more eloquently than me. Simply put – it can lead a person to believe that her shadow thoughts are wrong.

The shadow and the light are not really opposites – they are two sides of the same coin. If you are supporting people with cancer as a medical professional or as a loved one, I beg you to make room for the shadow.

Don’t let your own fear of the unknown get in the way. As I love to say, the monsters in our heads are far, far larger than any reality I’ve ever met.

We need to shine a light into those dark, dusty corners rather than pretend they aren’t there. I think the best gift you can give someone is a safe place to explore it all, light and dark.

3 thoughts on “Prognostication”

  1. Dark thoughts and low moments may be inevitable for some but not for others. Some may choose not to go there. Doesn’t make one approach better or worse…just different. In any event, unhampered healthcare markets would find providers positioning to serve patients who have particular mindsets/needs.

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