Cancerese: Coming To Terms With The Terminology of Cancer, Or Moving Beyond

“Words are, of course, the most powerful drug used by mankind.”

This, one of English writer Rudyard Kipling’s most famous quotes, is from a speech Kipling presented in 1923 to the Royal College of Surgeons in London. He metaphorically compares words to drugs to demonstrate the deeply persuasive power of words.

As Kipling says in the next sentence of his speech:

“Not only do words infect, egotize, narcotize, and paralyze, but they enter into and colour the minutest cells of the brain. . . .”

Kipling’s words offer the nearly perfect segue into the latest column of Susan Gubar, who writes of the often unintended, destructive meanings behind much of today’s cancer vocabulary.

While I continue taking an experimental drug to keep my cancer at bay, I cannot claim to be in either a remission or a recurrence, and the word “maintenance” does not shed much light on the situation. The paucity of the language at my disposal stymies me, as does its obfuscations.

“Language is the mother of thought, not the handmaiden of thought,” the poet W. H. Auden once said, quoting the aphorist Karl Kraus, and then he added, “Words will tell you things you never thought or felt before.” Some of the vocabulary swirling around cancer leaves me feeling what I never wanted to feel or unable to think what I need to think.

Gubar resists use the pervasive tag “cancer survivor” because “it erases or demeans patients who do not or suspect they cannot survive the disease.”

Consider, first, medical lexicons that appear to blame the people receiving care. A patient said to have “failed tamoxifen” knows the drug has failed her. Similarly, a “platinum resistant” or “refractory” patient experiences not her refractory resistance but a drug’s ineffectuality. The word “relapsed” seems to find fault with people who have fallen back into error. Preferring the term but dreading the fact of recurrence, I bristle at surgical scans said to be “clean,” for the word makes me feel that I have been or will become dirty.

In the topsy-turvy world of cancer, anything “positive” or “advancing” spells trouble. Yet a brain labeled “unremarkable” after an M.R.I. hardly conveys the good news it contains.

Cancer’s most prominent words simply sound horrible to my ear: the mal at the start of malignancy and the hiss at the end of metastasis, as well as the hard-to-pronounce cachexia (loss of body mass) and ascites (buildup of fluids), not to mention such drugs as bevacizumab (Avastin), capecitabine (Xeloda), pemetrexed (Alimta) and trastuzumab (Herceptin). Doesn’t it seem sinister (and confusing) that each has an a.k.a.?

Just as jarring is the use of fine words in grotesque settings: cancer has “seeded” itself throughout the body; nodes have been “harvested”; a tumor is “indolent.”

Euphemisms for tumors abound. I have often been told that scans showed a lesion, shadow or spots. Before a number of medical regimens, I was informed about “minimal or acceptable side effects,” only later to wonder if I should have undergone treatments that left me with sores and rashes so debilitating that I could not swallow or with bone-wearying exhaustion that made it impossible to stand up. Because hospital idioms mask brutal realities, Dr. Susan Love came up with the now ubiquitous phrase “slash, burn and poison.”

…After genetic testing produced a population of people aware of their heightened risk of developing cancer, the neologism “previvor” arose to describe those who have tested “positive” for a deleterious mutation. It refers to survivors of a predisposition to cancer and has largely replaced the medical category — “unaffected carriers” — that turned this group into a contaminating menace.

Gubar offers portmanteaus — two words combined to produce a third — that capture the dread of cancer as well as efforts to cover it up. Her favorites:

Scanxiety, designates fears accompanying the anticipation of a test that may show evidence of disease. Chemoflage, as used by the anthropologist S. Lochlann Jain, mocks the deceptive information circulated by cheery chemotherapy brochures.

As Gubar makes clear, the words of cancer — Cancerese — too often offer little to promote the Emotional Reconstruction and support so needed by those affected with a cancer diagnosis.

Indeed, Cancerese is the language of medical providers speaking to medical providers, when what is needed instead is a vocabulary that speaks humanely to people, rather than threatening them.

Read Gubar’s thoughtful column in the New York Times.

[Ilustration by Keith Negley, Source: The New York Times]

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