This will be the name of my next band. It’s also the name that the National CAncer Institute has suggested for certain “non-malignant conditions” that are currently called cancer, like ductal carcinoma in situ, a lesion that often shows up on mammograms and scares the bejesus out of women, not to mention leads to all sorts of treatments. “The word ‘cancer’ often invokes the specter of an inexorably lethal process,” an NCI panel wrote in JAMA. “However, cancers are heterogeneous and can follow multiple paths, not all of which progress to metastases and death, and include indolent disease that causes no harm during the patient’s lifetime.” And detection of these indolent lesions, they continue, can be dangerous because it leads to unnecessary procedures.
I remember when my first wife got one of those phone calls about a funny mammogram, the kind that only come on a Thursday or Friday and leave you to worry all weekend. By the time we got to the follow-up visit early the next week, we were both nervous wrecks, she, understandably, more than I. As we were crossing the street to the hospital, she realized she had forgotten something in the car, which upset her even more. She spun around to return to the car. The pavement was a little wet from an earlier rain, and she slipped and fell. She was not injured, but it was the kind of accident that happens when you feel like your life is out of control, and seems to embody your situation. For a moment it seemed like misfortune would just cascade forever.
She turned out to be fine. Even better, the tests didn’t require all that much of her (aside from the time and worry)–no needle biopsies, no radiation-assisted scans, no knives. But that;s not always the case. Many of these screening tests–mammograms, pap tests, PSA assays–turn up “precancerous” or nonmalignant conditions on a frequent basis and lead to what the NCI panel calls overdiagnosis, which in turn leads to overtreatment. Between the stress of the diagnosis and the dangers of the follow-up tests and treatment the problem is a serious one. And much of it can be attributed to the effect on both doctor and patient of the word “cancer.” So, the panel reasonably concludes, the “the term “cancer” should be “reserved for describing lesions with a reasonable likelihood of lethal progression.” If it probably won’t kill you, in other words, it doesn’t deserve to be called cancer.
By recognizing the effect of nomenclature on people and on the society that pays for these treatments, these doctors are taking responsibility for unintended consequences of their profession’s actions. They’re implicitly acknowledging that some of those lopped off breasts and excised prostates have been sacrificed without cause, and that the harms suffered–pain, disfigurement, impotence, incontinence, surgical complications–have been unnecessary. They’re not hiding their proposal in a murky claim about the science demanding these changes, as if some new instrument had allowed them finally to map the boundaries of cancer, but rather acknowledging the contingency of those boundaries and suggesting that they be renegotiated for what amount to pragmatic and social reasons, not scientific ones.
Contrast this with the American Psychiatric Association’s studied avoidance of acknowledging the pragmatic and political motivations behind some of the changes they made in the DSM-5, especially the change in the ASperger’s diagnosis. The APA was surprised to hear that the diagnosis had bestowed an identity on people with Asperger’s–a naivete that seems nearly willful, given the high profile of the disorder and the idea of “neurotypicality” that is spawned. And they were adamant in denying that they were trying to rein in the diagnosis or do anything of the sort, resorting instead to scientific mumbo-jumbo that was embarrassingly ineffective and only highlighted even further the contingent nature of the category. Of course, they can’t exactly do that, because unlike oncology, psychiatry can never touch bottom; there is no end to the contingency and uncertainties of psychiatric diagnosis, whereas an oncologist can at least see a neoplasm, even if they have to struggle over what to name it. So psychiatrists have to avoid what the cancer docs can face head on. What is straightforward, even common sense, for cancer doctors is taboo for psychiatrists. This is probably why the APA hasn’t seized on the very public NCI statement and used it as an illustration of its claim that psychiatry just isn’t that much different from the rest of medicine.
But there’s something else about the NCI paper that should really grab attention. It;s right in the opening paragraph.
Over the past 30 years, awareness and screening have led to an emphasis on early diagnosis of cancer. Although the goals of these efforts were to reduce the rate of late-stage disease and decrease cancer mortality, secular trends and clinical trials suggest that these goals have not been met; national data demonstrate significant increases in early-stage disease, without a proportional decline in later-stage disease.
I think what they’re saying here is that they’ve managed to identify (and presumably treat) a lot more early-stage disease, but not to prevent late-stage disease, i.e., death from cancer. Early detection, in other words, doesn’t necessarily improve the picture for many cancers. What it does do is to identify and treat succesfully a lot of cancers that might not have gone on to kill people, or even harm them for that matter. So the claim that medicine has gotten better at treating cancer, the one you see in ads for cancer centers or hear about from proud oncologists, is not as true as we might like. The number of successfully treated cancers has certainly gone up, but so has the overall number of cancers, and many of those “successful” treatments were also unnecessary. I don’t think anyone has done this on purpose, but the overall effect here is disconcerting.
If the APA is exercising this sort of carelessness, it makes me shudder to think of the mistakes that will be made as it trickles down to the level of application of this nomenclature by individual therapists and what they will say to their poor patients! By comparison, medicine may not be as successful as perceived in the area of cancer detection and treatment, but when we look at artificial hearts, or the many other surgeries that save people’s lives, there’s no doubt that they’re leaving psychology in the dust. [I think of the neurosurgeon who saved my son’s life when he was an infant after his birth mother hit him in the head. Medicine has gotten him out of the woods from the physical trauma of what she did to him, but the psychological repercussions are a different matter entirely.] At the risk of being too extreme, would you say that psychology/psychiatry, as sciences, are barely out of the dark ages?
It just occurred to me that I might be making a mistake by putting such a division between medicine and psychology. Considering for example, the case of a head injury that results in impulsive behavior and other disturbances in a child, where does medicine’s responsibility end and psychology’s begin?