Living in cancer limbo

Fifteen years ago, Mara Buchbinder and colleagues came up with the concept of the “patient in waiting.” The concept described a new category of patients created by cutting-edge testing — say, prenatal diagnostics that alerted parents to potential problems, even though they might not appear. The patient in waiting was, quite literally, someone who was waiting to see if they would become ill.

Now a professor and vice chair of the Department of Social Medicine at the University of North Carolina at Chapel Hill, Buchbinder is experiencing a new kind of patient in waiting phenomenon. Her husband, Jesse Summers, was diagnosed with metastatic colon cancer in 2021. It went into remission — but earlier this year, a test searching for disease recurrence came back weakly positive, suggesting that the cancer might be back but might not be. It put Jesse, and Mara, into a sort of limbo as they waited to see what the result meant.

On the “First Opinion Podcast,” I spoke with Mara and Jesse about their experience. “There are some ways in which I think that this concept [of the patient in waiting] really parallels what Jesse is going through and in some ways that maybe it doesn’t fit as well,” she said.

“You probably felt my being a patient and waiting more than I did, to be honest,” Jesse told Mara. “I know sort of in the background all the time that it’s possible that this will come back.”

We also discussed what new cancer treatments and diagnostics mean for patients, the meaning of Stoicism in cancer, caretaker roles, and more.

Our conversation was based on Mara’s recent First Opinion essay, “Liquid biopsy for cancer recurrence creates a new kind of patient-in-waiting.” Also mentioned in this conversation: an essay Jesse wrote for Slate last year, “What I’ve Learned From Having Cancer Is Nothing,” and a piece I published in Slate years ago by Elaine Schattner, an oncologist who had breast cancer and dislikes the term “cancer survivor.”

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