As pathologists, we should never lose sight of what our diagnoses mean, or should mean, to the patients who will carry them. I have touched on this topic, at least tangentially, before but a recent, rather nicely done essay by Gina Kolata in the New York Times reminded me of the importance of our words. In particular, the words "cancer" and "carcinoma" instill the sort of primal, reptilian fear usually associated (at least in susceptible individuals) with things like snakes, spiders, and dizzying heights. The public is in large part unaware or only marginally aware of what a huge spectrum of disease these words encompass, ranging from in-situ lesions and inconsequential invasive lesions like basal cell carcinomas of the skin with virtually no associated mortality to uniformly (and rapidly) fatal tumors such as glioblastoma multiforme and inoperable pancreatic carcinoma.
The essay focuses in part on what I believe is a particularly bad use of these terms, referring to DCIS of the breast as Stage 0 cancer (carcinoma). Are most patients really capable of understanding the significance of this lesion? Or do they hear the words "cancer" or "carcinoma" and none of the modifiers that follow them? Even if they DO understand the meaning of their particular form of cancer at some higher cortical level, does this overpower the primal power of the word? To continue the analogy above, if you're a "snake hater" does your brain really distinguish in a logical, rational fashion between small harmless garden snakes, big harmless black snakes and rattlesnakes? Probably not; you get that same primal fear around any of them. That's the power that the words "cancer" and "carcinoma" have over many (most?).
Does the power of these words contribute to unnecessary treatment, anxiety, medical expense, etc.? I think it does. As the essay points out, gynecologic pathologists addressed this issue with regard to cervical carcinoma in-situ in 1988 and developed the "intraepithelial neoplasia" terminology that eliminates the word "carcinoma" from these in-situ lesions. This terminology has been adopted by others, leading, for example to the "PanIN" system for pancreatic ductal neoplasia. Unfortunately, other specialists have not been so far-sighted or so successful in modifying terminology to better reflect disease. But the tide is slowly turning and quite a few clinicians are beginning to raise this issue. Two years ago and expert panel at the National Institutes of Health said that the word "carcinoma" (cancer) should be eliminated from all in-situ lesions. So far, unfortunately, their advice has gone largerly unheeded. Perhaps in part due to concerns about lack of clinician understanding and even increased medicolegal liability.
There's also a "factoid" in the essay of which I was not aware. Donald Gleason, developer of the Gleason grading system for prostatic carcinoma, was in favor of re-labelling 3+3 prostatic adenocarcinoma as "adenosis" because of its indolent clinical course. Rightly or wrongly, he lost that argument.
The essay is a quick read. It's always refreshing when the lay press delves into a medical issue and gets it more or less exactly right.