An outstanding primary care physician asked me to see an 86-year-old man with elevated PSA. His rationale was that the patient is fit, has an excellent quality of life and “just doesn’t want to die from cancer.” The interaction underscores the trust physicians and patients have in our ability to detect and manage heterogeneous cancers which, depending on many variables and competing risks —known and unknown, quantifiable, and unmeasurable — may or may not be lethal.

A cancer diagnosis changes patients’ lives, a point reflected in the title of the Pulitzer Prize-winning book The Emperor of all Maladies: A Biography of Cancer by Siddhartha Mukherjee, MD. In years past, early detection was the only hope, whereas late-stage disease was nearly universally fatal in short order.

As our understanding of the diverse natural history of screened cancers has grown, active surveillance (AS) of many low-risk solid urologic tumors is now acceptable and guideline based. Finelli et al recently reviewed the
Canadian experience in over 8500 men with low risk prostate cancer who initially underwent a period of AS (2008-2014). While there was a near doubling in the use of AS (from 38% to 69%) as a management strategy, the researchers noted that more than half of the men sought active treatment after a median of 48 months follow-up. Importantly, only half of those men chose active treatment due to grade progression.

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While retrospective analyses like these create more questions than answers, what remains clear is that once a diagnosis of cancer is made, many patients will choose treatment. This has led to past calls to rebrand non-lethal cancers. One such term, IDLE, or indolent lesions of epithelial origin, proposed almost a decade ago remains relegated to Pubmed.

Many justifiably fear cancer. While the idea of AS continues to slowly gain acceptance, most patients are easily moved toward treatment. We must continue to research and educate patients on the differences between a histologic diagnosis of cancer and a biologic one, and decide if we define cancer by its beginning or by its end when creating a treatment plan.

We must also work to understand and communicate the tradeoffs with our current interventions and acknowledge the limitations of “shared decision making” when there are significant knowledge
differentials between patients and providers.

It’s time to acknowledge the biases patients and physicians have regarding AS for “cancer” and rebrand the concept.