New terminology, IDLE threats, and human behavior (about cancer)

An article by Esserman et al. in the May issue of Lancet Oncology has again laid out the argument being made by a number of leading cancer specialists that “new terminology” is a necessary requirement for smarter discussions between all relevant parties about “indolent and precancerous disorders”.

The “New” Prostate Cancer InfoLink has considerable sympathy with this point of view. Like Dr. Esserman and her colleagues, we also believe that

indolent lesions with low malignant potential are common, and screening brings indolent lesions and their precursors to clinical attention, which leads to overdiagnosis and, if unrecognised, possible overtreatment.

On the other hand, we also sympathize with the perspective that “cancer is cancer” and it could be equally misleading to use a term like the proposed term “indolent lesion of epithelial origin” (IDLE) to refer to specific types of low- and very low-risk lesions without A great deal of careful pre-education.

What we have here is a “chicken/egg” situation, in which we really aren’t quite good enough (yet) to define truly indolent lesions with low risk for malignancy with accuracy — and/or to differentiate IDLEs from similarly appearing lesions that may have higher risk for malignancy or (worse) to not find and therefore not appropriately identify a small high-risk lesion among a set of IDLEs that pose little to no threat for patients.

While the subtleties of these distinctions can and should be understandable for experienced clinicians (and even for cancer educators who spend much of their time addressing issues of this type), the new patient who needs to be told that he has an “indolent” or “precancerous” lesion is not is a very good position to understand this today at all. And in the case of prostate cancer, it can be very difficult to identify the distinction between IDLEs and clinically significant disease on the basis of a single biopsy.

I can hear the patient’s response today,

I’ve got an indolent something or other but it’s cancerous? What are you telling me? Do I have cancer or not?

If you don’t have significant knowledge about cancer, that’s not an unreasonable answer to being told you have an “indolent or precancerous lesion of epithelial origin.” You have no grounds for being able to understand the distinctions being made. It’s kinda like an IT geek telling you, “By running IE6.0 as your browser now your compounding risk for viruses and other serious problems”. High risk for what? What’s IE6.0?

There is no doubt that we do need new terminology and new language to talk about the clinical risks associated with pathologically “low-risk” forms of prostate cancer (and equivalent forms of other cancers like breast cancer). Perhaps the trick would be to set a future date at which such terminology would become standard, so that we all have some time to adapt to this new set of ideas. Certainly it seems unlikely to The “New” Prostate Cancer InfoLink that one could just introduce this new terminology on January 1, 2015, and think that everyone will be able to adapt to it with facility.

2 Responses

  1. Hmmmm … While I agree with your conclusion that we need new language, I am not sure I fully agree that “cancer is cancer” — although I take your point.

    Laura Esserman as well as Peter Carroll, Matt Cooperberg and many others have been pushing this point of view for some time. Perhaps IDLE cells are not in fact cancer — although that’s the only word we have had to describe them in the past. These cells are clearly abnormal, but if they do not multiply and spread in the same fashion — if, in fact, they are invariably benign — then they should not be associated with the same risk as cancerous cells that will spread through and beyond their site of origin and possibly be fatal if left untreated.

    Why is this so important? Because we associate “cancer” with the severest of ramifications, and so our instinct is to remove the threat. Removing a benign threat is over-treatment — and, particularly with plagues, that plagues our illness.

    I do not think we disagree, Sitemaster — new language is required and certainly education is of the essence. We have to start somewhere, and renaming benign albeit abnormal cells will force that re-education sooner rather than later. Sadly, there will still be mistakes made by the pathologist in prostate cancer as long as they depend on visual judgement; however, we may save a lot of unnecessary procedures.

  2. Rick:

    At the end of the day, this all comes down to the individual doctor’s and the individual patient’s attitudes to risk. Sadly (and this is why casinos have long been a profitable form of business), most of us aren’t that good at making wise decisions about risk!

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