Cancer comes with its own language. Nobody warns you about this. You expect scans, needles, waiting rooms, radiation machines and physicians who can pronounce pharmaceuticals containing more syllables than the Belgian national anthem. You do not expect to discover that English itself will require treatment. The cancerverse takes ordinary words, removes their normal meanings and returns them wearing hospital identification bracelets. Positive becomes bad. Negative becomes good. Stable becomes exciting. Progression is the opposite of progress. A treatment can nearly flatten you while remaining “well tolerated.” A side effect that wakes you six times a night is “bothersome.” A three percent chance of catastrophe becomes a “small possibility.” Something changing inside you is “evolving,” which makes it sound as though it has enrolled in university. After enough appointments, reports, support groups and oncology literature, you begin to suspect that cancer has not merely developed a vocabulary. It has established its own Department of Euphemisms.
We might as well begin with the original offender: “journey.” Cancer is not a journey unless someone has radically changed the definition of travel. Journeys are generally voluntary. You select a destination. You pack underwear. There may be wine. Nobody begins an actual journey because a pathologist called and announced that several biopsy cores were positive. Calling cancer a journey imposes narrative structure where none necessarily exists. Journeys are supposed to lead somewhere. Cancer frequently consists of waiting, treating, recovering, worrying, testing and discovering that the destination has moved. If we absolutely require a transportation related description, “abduction” has greater technical merit.
Credit where credit is due: Dr. Doreen Tetz was the one who first suggested to me that “journey” deserved a place on the banned list, thereby performing a small but valuable public service for the cancerverse. I imagine Mr. Doreen sitting across from her over his morning tea, muttering that cancer is most certainly not a journey because, if it were, there would presumably be scenic stops along the way, delicious dinners, spectacular sunsets and some reasonable expectation of a happy ending. Instead, you get hospital parking, fluorescent lighting, gowns that open at the back and complete strangers developing an intense professional interest in parts of your anatomy previously reserved for marriage and occasional medical emergencies. It is, after all, not a Thai massage.
Several brothers and sisters, members of the Cancer Club, have since objected, quite reasonably, because they genuinely like the word. For them, “journey” captures movement through diagnosis, treatment, uncertainty, recovery and whatever comes next. It gives an otherwise chaotic experience a beginning, some sort of middle and perhaps even a destination. I understand that. If “journey” helps you describe your own cancer, use it with my blessing and perhaps a decent pair of shoes. The objection is not to patients choosing the word for themselves. The objection is to everyone else choosing it for us. Hospitals, fundraising departments, pharmaceutical brochures and well meaning acquaintances have turned “your cancer journey” into the default description of an experience that many of us did not choose, cannot leave and have no idea where it is taking us. Journeys involve agency. Cancer frequently begins with a doctor informing you that your itinerary has already been booked.
So after hearing the defence, the court remains unmoved: “journey” stays banned from institutional cancer language. Patients may apply for a personal exemption. Everyone else can find something more accurate. Call it the cancer gauntlet. The shitshow. The hostage situation. The involuntary medical internship. The cellular insurrection. The oncology obstacle course. The biopsy to bowel movement continuum. The Grand Tour of Rooms Where Someone Eventually Asks You to Remove Your Pants. My own preference remains “gauntlet” because a gauntlet does not pretend there is scenery, enlightenment or a charming destination waiting at the end. You enter because circumstances shoved you through the door, unpleasant things happen along the way, and your principal ambition is to emerge from the other side with as many original parts as possible. “Journey” can have Tuscany, sunsets and inspirational music. Cancer gets the gauntlet.
Then we have “battle,” “fight,” “warrior” and “fighter,” four words that should be retired together and given a small ceremony. “He fought bravely.” “She lost her battle.” “He’s a fighter.” Cancer is not impressed by courage. Tumour cells do not retreat because the patient demonstrates sufficient moral character. Treatment response is biology, medicine, probability and occasionally dumb luck. The worst phrase is “lost the battle,” which manages to turn death into personal underperformance. Apparently the patient should have fought harder. Perhaps another round of positive thinking would have persuaded the metastatic lesion. People undergo treatment. They endure treatment. They make decisions. They live with cancer. Sometimes they die from it. None of this represents cowardice.
“Survivor” is more complicated because many people embrace the word and they are entitled to it. But it should never be imposed. When exactly does survivorship begin? Diagnosis? Surgery? Remission? Five years? When somebody hands you a T shirt? For some people survivor feels triumphant. For others it feels premature, particularly when cancer remains present, recurrence remains possible or treatment continues indefinitely. Use it if someone chooses it for themselves. Otherwise their name remains surprisingly effective.
“Inspirational” deserves particular suspicion because cancer patients are not public motivational equipment. Calling someone inspirational can be sincere, but cancer culture has developed an alarming habit of turning ordinary endurance into theatre. A patient goes through chemotherapy, radiation or surgery because the alternatives are not especially attractive, and suddenly everyone is inspired. Sometimes survival is inspirational. Sometimes survival is Tuesday. A man dealing with urinary leakage, hot flashes, erectile dysfunction and fatigue may not be trying to inspire the neighbourhood. He may merely be trying to buy groceries without requiring an emergency reconnaissance of every available toilet. Let people inspire you through what they actually do, not simply because something terrible happened to them.
Then comes “stay positive,” possibly the most exhausting instruction in oncology. Patients are allowed to be frightened. They are allowed to be angry. They are allowed to think something is unfair without compromising their treatment response through insufficient cheerfulness. Cancer does not require emotional customer service. “Stay positive” often makes the speaker feel better because the patient’s fear is uncomfortable. It can become an instruction to stop discussing reality. Sometimes the psychologically healthy response to bad news is to acknowledge that it is bad news.
Which brings us to the magnificent linguistic stupidity of “positive” and “negative.” Everywhere else, positive means desirable and negative means undesirable. Oncology apparently found this arrangement insufficiently confusing. Positive biopsy: bad. Negative lymph nodes: good. Positive margins: bad. Negative scan: potentially excellent. Meanwhile the patient is simultaneously instructed to remain emotionally positive while desperately hoping every medical result will be negative. The ideal oncology patient is therefore positive about being negative. Perfectly clear. Somewhere a linguist is drinking before lunch.
“Well tolerated” may be medicine’s greatest contribution to creative writing. A treatment can cause fatigue, hot flashes, diarrhea, nausea, cognitive changes, sexual dysfunction, skin reactions, insomnia and enough general misery to make someone reconsider the philosophical merits of consciousness, and the literature will still describe it as well tolerated. By whom? “Tolerated” does not mean pleasant. It often means the patient continued taking the treatment and did not experience toxicity severe enough to require discontinuation. That is useful information for researchers. It is considerably less useful to the person about to swallow the pill. If twelve percent of patients experience significant fatigue, say twelve percent experience significant fatigue. Do not tell me the treatment is well tolerated and make me discover afterward that “tolerated” means I remained technically alive while complaining.
Its irritating little brother is “bothersome.” Hot flashes may be bothersome. Urinary frequency may be bothersome. Sexual dysfunction may be bothersome. A mosquito is bothersome. Someone blocking the supermarket aisle with a shopping cart while conducting a family reunion is bothersome. A treatment effect that alters sleep, intimacy, continence or daily function deserves language proportional to its effect. “Bothersome” subtly moves the problem from the treatment to the patient. The side effect is apparently manageable; you merely happen to be bothered by it. How terribly inconvenient of you.
“Quality of life” should not be banned outright, but it deserves permanent linguistic surveillance. Doctors understandably use quality of life as an outcome measure. The problem arrives when it becomes a vague substitute for discussing actual life. Whose quality? Measured how? Sexual function? Continence? Energy? Cognition? Pain? Mobility? Independence? Ability to work? Ability to sleep? Ability to enjoy dinner without knowing the location of the nearest toilet? Do not tell a patient a treatment may affect quality of life. Tell him what it may affect. He will decide what constitutes quality.
“Slight chance” and “small possibility” are adjectives attempting to do mathematics. There are no slight chances when the unlikely event is happening to you. One percent is a number. Five percent is a number. Slight is not a number. The physician hears slight chance and thinks unlikely. The patient hears slight chance and spends the next three nights calculating whether he is about to become the exception. “Small possibility” is the same offence wearing nicer shoes. Small compared with what? Cancer patients do not experience probabilities as abstract populations. A two percent risk can be rationally described as low while still being emotionally enormous. Give us the percentage. Explain the uncertainty. Let us decide how small it feels.
“Marginal” belongs in the same holding cell. “The benefit is marginal.” Marginal in what units? Two weeks of survival? Six months? A three percent absolute reduction in recurrence? A ten percent relative improvement? Marginal is a population word that can become deeply misleading at the individual level. A modest statistical benefit may be irrelevant to one patient and extremely valuable to another. Numbers first. Adjectives afterward. The same goes for “increased odds,” which sounds frightening while communicating almost nothing without the baseline risk. If something increases my risk by fifty percent, that sounds alarming. If my original risk was two in ten thousand and it becomes three in ten thousand, I may postpone writing my farewell address. Relative risk without absolute risk is one of medicine’s most efficient methods of terrifying people while remaining mathematically correct.
“Evolving” is another beauty. Butterflies evolve. Civilizations evolve. Belgian bureaucracy evolves mainly by adding another form. Disease should be described more specifically. An “evolving lesion” immediately raises the question that matters: evolving how? Growing? Shrinking? Changing appearance? Becoming suspicious? Resolving? “Evolving” describes motion without direction, which is precisely the information the patient wants. “Near term” performs a similar trick with time. Near term requires a calendar. To a medical system it might mean six months. To a cancer patient six months may constitute an entire psychological era. If you mean six weeks, say six weeks. If you mean six months, say six months. Time becomes extraordinarily valuable after a serious diagnosis. This is not the moment to describe it approximately.
“Stable” receives conditional parole because stable can genuinely be excellent news, but explain it. Stable disease does not necessarily mean harmless disease, disappearing disease or cured disease. It means that according to the criteria being used, meaningful progression has not been detected. Cancer patients quickly discover the peculiar pleasure of being told nothing happened. In ordinary life stagnation is disappointing. In oncology we occasionally celebrate it with expensive wine. “Progression,” meanwhile, provides another linguistic reversal. Progress is normally desirable. Progression is usually not. If cancer has progressed, explain what changed. Size? Number of lesions? Location? Biomarkers? Symptoms? Patients deserve the substance, not merely the classification.
“Active surveillance” may be the masterpiece of oncology rebranding. There can be excellent clinical reasons for surveillance and it can prevent enormous amounts of unnecessary treatment, but the phrase makes watching sound suspiciously energetic. The patient is not doing nothing. He is living between tests. He is noticing every urinary change, examining every PSA result and discovering that three months can pass in an afternoon until the week before the next blood draw, when time suddenly develops the efficiency of Belgian municipal government. Watching may be clinically sensible. It is not psychologically passive.
“Good cancer” gets no parole whatsoever. There are cancers with excellent survival statistics. There are cancers that are highly treatable. There are cancers with relatively favourable prognoses. There is no good cancer. Calling prostate cancer, thyroid cancer or certain early stage cancers “the good cancer” trivializes diagnosis, treatment and side effects. A disease does not become good because another disease is worse. A broken ankle is preferable to being hit by a bus. Nobody therefore advertises the good broken ankle.
“Everything happens for a reason” should be banned without appeal. Sometimes things happen because cells accumulate mutations. The universe does not necessarily have a lesson plan. People are free to find meaning in illness and that meaning can be enormously valuable, but meaning discovered by the patient is different from meaning assigned by someone standing beside the bed. Its equally sticky cousin, “cancer is a gift,” should be returned to sender. Cancer may change priorities. It may deepen relationships. It may clarify what matters. It may produce unexpected friendships, insights or gratitude. Those things can be gifts. The cancer is still cancer. If an arsonist burns down your house and you meet your future wife at the insurance office, the arsonist does not get invited to the wedding.
“Opportunity for growth” deserves similar treatment. Cancer is not a corporate leadership retreat. Growth may occur after adversity. It may not. Some people emerge wiser. Some emerge traumatized. Most emerge as complicated mixtures of both. There should be no performance requirement attached to suffering. You do not owe cancer personal development.
“Hope,” however, should not be banned. It should be regulated. Hope can sustain people, but it can also become censorship. Families sometimes insist upon hope because honest discussion of decline frightens them. Patients who want to discuss death can be accused of giving up. Caregivers who raise practical questions can be labelled negative. Hope should expand the conversation, not terminate it. You can hope for another year while preparing for the possibility that you will not get it. Human beings are capable of holding two ideas simultaneously, although watching politics sometimes makes this difficult to prove.
“We’ll watch this closely” may remain in circulation only if followed immediately by an explanation of what closely means. What are we watching? How often? What change triggers action? What happens if it changes? Without those answers, “we’ll watch this closely” is medical language for putting anxiety on a recurring subscription. The same applies to “nothing concerning.” Concerning to whom? Radiologists understandably distinguish clinically meaningful abnormalities from the enormous collection of weird little things discovered when modern imaging peers inside older humans, but patients reading their own reports need context. “No findings suspicious for metastatic disease” is information. “Nothing concerning” leaves enough empty space for imagination to establish a branch office.
“Limited options” also requires immediate expansion. Limited does not mean none. Which options remain? What might each accomplish? What are the tradeoffs? What happens without treatment? Patients can cope remarkably well with difficult information. What they struggle with is vague information that leaves enough empty space for fear to start writing its own medical report.
“Comfort care” deserves explanation rather than prohibition because comfort focused treatment is still treatment. Pain control is treatment. Breathlessness management is treatment. Anxiety relief is treatment. Hospice is care. The shift away from trying to control cancer is not abandonment of the patient. This is why “there is nothing more we can do” may be among the worst sentences in medicine. There is almost always something that can be done. The goal has changed. Say that. Do not erase an entire field of care because another treatment has stopped working.
“Victim” and “brave” belong in a special category because patients should retain naming rights. Some reject victim because it implies passivity. Others consider it an accurate description of having something inflicted upon them. Some people genuinely feel brave. Others are terrified and proceed anyway because every alternative is worse. Calling every cancer patient brave can accidentally create another obligation. Now, in addition to being sick, frightened and exhausted, the patient must apparently demonstrate exemplary character. Allow cowardice occasionally. It is terribly underrated.
And perhaps that brings us to the real problem, because the dictionary is not actually about banning words. It is about banning words when they replace information. Journey replaces experience. Battle replaces biology. Inspirational replaces suffering. Well tolerated replaces toxicity. Bothersome replaces impairment. Quality of life replaces specifics. Slight chance and small possibility replace probability. Marginal replaces magnitude. Increased odds replaces absolute risk. Evolving replaces direction. Near term replaces time. Positive and negative turn ordinary English inside out. Hope can replace honesty. Good cancer replaces perspective. Active surveillance can disguise the psychological burden of waiting. Comfort care can sound like surrender. And “nothing more we can do” can erase everything medicine can still do when cure or disease control is no longer possible.
That should be the only rule we actually need: never use a comforting, minimizing or vaguely medical sounding word where a precise sentence would serve the patient better. Cancer patients do not need language disinfected before it reaches them. We need understandable probabilities, realistic timeframes, clear descriptions of side effects, honest uncertainty and doctors willing to say “I don’t know.” In fact, “I don’t know” may be one of the most reassuring sentences in oncology when it is true. It tells you the person sitting across from you has resisted the ancient medical temptation to fill uncertainty with vocabulary.
The cancerverse will probably continue inventing euphemisms because human beings have always softened frightening things with language. We call dying “passing.” We call firing people “restructuring.” We call airline economy seats “comfort class” despite overwhelming physical evidence. But cancer is difficult enough without requiring simultaneous translation. Tell me what happened. Tell me what might happen. Tell me how likely it is. Tell me when. Tell me what treatment may accomplish and what it may cost me. And if you genuinely do not know, tell me that too. Just please stop telling me that my evolving situation carries a slight possibility of a marginal near term negative outcome while encouraging me to remain positive because the treatment is generally well tolerated. At that point I no longer know whether I have cancer or have accidentally wandered into a meeting of the Bank of Canada.
If I May… There is one word I have absolutely no intention of banning: help. While we argue about journeys, battles, positivity and whether “well tolerated” was invented by someone who has never actually tolerated anything, babies in a NICU have considerably more immediate concerns. My daughter Ashley is a NICU nurse, and I am using these essays to help raise money for two desperately needed bassinets, roughly $30,000 each, for the local NICU. No inspirational journeys. No warriors. No carefully polished language about making a difference. Just very small human beings who need very expensive equipment and nurses who know exactly what to do with it. If these essays have occasionally made you laugh, think, swear or feel slightly less alone in the cancerverse, consider throwing a few dollars toward the babies. They have not yet learned any of our banned words, and with luck their biggest concern for quite some time will be filling a diaper somebody else has to change.
The essays and all other content created by me will remain free. The bassinets, unfortunately, are not.
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