Illustration by Kimberly Carney / Fred Hutch News Service
Like many diseases, cancer has its own special language. It’s one of the first things I learned after I was diagnosed with breast cancer back in 2011. Well, actually, I learned it at the exact same time.
“Your biopsy results came back,” the radiologist told me over the phone. “They’re all positive.”
“Oh thank God,” I said, relief washing over me. A nanosecond later, the relief was gone. Apparently, positive is not positive in the world of cancer. Positive is awful. Negative results are what you want.
What else do you want? “Unremarkable” body parts, especially if those body parts have just been scanned by CT or PET or MRI. My uterus is unremarkable according to my scans, which I at first thought was a snide jab from some lab tech until my doctor explained it just meant there was no sign of cancer.
So apparently cancer isn’t just positive, it’s also remarkable. That’s not confusing at all.
Whether it’s topsy-turvy meanings for words like positive, negative or progression (another bad thing in Cancerland), stilted phrases like “poor outcome” or “end-of-life event” when referring to death, or the murky, quirky alphabet soup of medical-speak — “You have ER+ PR+ HER-2/neu negative invasive lobular carcinoma, or ILC. Any questions?” — most cancer patients have run up against a “lost-in-translation” moment with their doctors. I’m not talking about patients who speak a different language (although this can certainly up the confusion). Or the shell shock that happens as soon as somebody in a white coat drops the C-bomb, that thing where time stands still and you suddenly turn into a patient version of that old "Far Side" cartoon “What dogs hear”: Blah blah blah cancer blah blah blah blah cancer blah blah blah.
I’m talking about leaving a surgeon's or oncologist’s office with absolutely no clue as to what’s going on with your body or what they’re going to do about it. If your doctor uses euphemisms like “neoplasm” or “malignancy” to explain your diagnosis, you might not even know you have cancer.
Photo by Robert Hood / Fred Hutch News Service
One breast cancer buddy said that when her doctor first told her she was triple negative, she thought it meant he’d tested her again and again and again and it had come up “no cancer three times.” Another friend, diagnosed with lymphoma last fall, said he got completely thrown off by the term aspiration biopsy, thinking “Well, if it’s aspirational, it can’t be that bad.”
This is common when people are first diagnosed; the language of cancer is often upside-down. (Seriously, the patient failed the treatment? Don’t you mean the treatment failed the patient?) But medical jargon is relentless throughout the cancer “journey” (another fave euphemism). Moderately differentiated? Mitotic rate? Cytotoxic? Brachytherapy? Autologous BMT? Say what?
A few years ago, the National Cancer Institute gently reminded oncologists that not all patients had Ph.D.s in a 222-page monograph advising them, among other things, to “listen, avoid interruptions … and provide clear and jargon-free explanations” to their patients, particularly when they’re delivering a diagnosis.
But jargon still reigns supreme in Cancerland.
One recent study looked at 50 pancreatic cancer websites and found every single one had overestimated the reading ability of its users (sometimes by a lot). Another study on notification letters sent to women with dense breasts (putting them more at risk for breast cancer) found that, ironically, the letters were too dense for most women to comprehend.
Even Vice President Joe Biden knows it's an issue. Just this week he announced the launch of a patient-friendly search system for clinical trials (Trials.Cancer.gov) where “anyone can search [the] site using real words — rather than medical jargon — to find a list of trials that could be right for them or their loved ones.”
Patient advocate Bridgette Hempstead, founder of the African-American breast cancer support group Cierra Sisters, said she often acts as an interpreter for the women in her group.
"They don't understand the terminology, they don't know what kind of tests they're supposed to get or why," she said. "They don't understand what staging means or the types of cancers. It happens all the time. We have to interpret what the doctor has said so they can ask intelligent questions."
Photo by Robert Hood / Fred Hutch News Service
That’s a problem, said Dr. Bernardo Goulart, a researcher-physician with Fred Hutchinson Cancer Research Center and its treatment arm, Seattle Cancer Care Alliance.
“First and foremost,” he said, “doctors — and oncologists in particular — have a professional obligation to provide patients with accurate medical information in a way that patients can properly digest it.”
The lung cancer oncologist and University of Washington professor acknowledged some doctors will talk to patients about the stage of their cancer without ever explaining what staging means. Or they will use euphemisms like "mass" or "tumor" without clarifying that it’s cancerous. But he said that’s not how it should be done.
“Words like 'malignancy' and 'neoplasm' are good for technical reports and progress notes, but if you’re conveying a diagnosis to a patient, you need to use the proper word, and that’s 'cancer,'” he said. “And if we’re using fluid terms around cancer like 'mass' or 'malignancy,' we have to make sure we complement that with clear information. It’s a cancerous tumor in your lung or your liver or whatever. The burden is on the physician … to make sure that patients understand, digest and engage in the decision-making process.”
Lots of people use jargon when they talk — lawyers, waiters, web developers — heck, even health reporters.
But some doctors become acclimated to it after years of medical training and have a hard time falling back into normal conversational English. Medical-speak may also make it easier to deliver bad news to a patient; those $3 words aren’t just medically accurate, they provide distance.
Fred Hutch file photo
Goulart said oncologists will fall back on complicated medical terms because they’re used to the jargon when they process the medical information in their minds. But he added, “We have the burden of going the extra mile and doing the translation into terms patients can digest.”
Former Fred Hutch clinical researcher and SCCA oncologist Dr. Tony Back, a national expert in patient-clinician communication, has published dozens of studies and even done a TEDx talk on the subject. His observations on the communication gap between patient and doctor are often practical and profound.
“Cancer care that is technically perfect can fall short if we cannot effectively communicate with those we are trying to help," he and co-authors Dr. Don Dizon and Dr. Mary Politi wrote in their 2013 book “The Power of Words: Discussing Decision Making and Prognosis.” "Using plain language is key to communication.”
Goulart sticks to plain language as much as possible, he said, especially when delivering a diagnosis.
“Even patients with higher education may have an impaired ability to process because they’re under huge emotional distress from the cancer diagnosis,” he said. “Their ability to process is decreased. I use lay language across the board.”
Clear communication — and context — are even more critical, he said, as treatments become more nuanced.
“Genetic testing is a rapidly evolving field and we have to communicate to patients about mutations, genetic tests, positive tests, negative tests,” he said. “In some cases, a positive test is a bad thing. But a positive test for a genetic mutation can also be a good thing. When I communicate about genetic testing in lung cancer, I actually explain we want this test to be positive. We want [the mutation] to be present because it will open more treatment options for you.”
Paving the way for understanding
Hempstead, the patient advocate, suggests oncologists pretend their patients are teenage children.
“We will never be on their [education] level,” she said. “We’re not trained to be on that level. But it would help if they would talk to patients like they don’t know what the heck is going on. Because that’s what’s happening: they don’t know what’s going on.”
I certainly didn’t know what was going on when I headed down the cancer path back in 2011. I could barely pronounce the word mastectomy, assumed a patient navigator carried around a sextant, and continually mixed up the terms seroma (a build-up of fluid under the skin) and Sonoma (a valley in California where wine is grown).
A little context here and there would have been a gift; ditto for an acknowledgement that medical jargon is weird and often completely backassward. In the end, though, what helped me most was to ask a bazillion questions. I grilled my doctors every time I had an appointment, sometimes bringing a digital tape recorder so I could listen to the conversation afterward. Granted, I ask questions for a living so it came naturally to me, but my doctors were always good about stopping to explain an unfamiliar term or mystifying procedure.
Cancer is scary, I know. But it’s even scarier when you don’t understand why you’re being stuffed into an MRI tube or getting some weird contraption implanted into your chest before chemo. And it can be deadly if you don’t understand that it’s essential you take a certain pill every day or go back to your oncologist every few months even after treatment’s over to make sure the cancer stays away.
I’ve found the more I learned about cancer, the more empowered and less frightened I felt. And somewhere along the line, a funny thing happened. The fog cleared and I began to understand more and more of the confusing cancer-speak.
That’s what I call a good outcome.
Communication tips for patients
- Stop the conversation and ask questions if you’re confused. It’s crucial for patients to be an active part of the decision-making process so if you don’t understand something, speak up and ask for clarification. “I encourage my patients to interrupt and ask about the exact meaning of a message any time they feel lost,” said lung cancer oncologist Dr. Bernardo Goulart. Still have questions after the appointment is over? Grab a nurse or medical assistant and ask them for help.
- Recap with your doctor before you leave. Try and reproduce the main message you've received during your visit, i.e., “So doctor, you’re saying I have a stage 4 breast cancer and your recommendation is for us to do a genetic test and decide on a treatment based on the test. Is that correct?”
- Bring a caregiver with you to the appointment. This is particularly important during the first oncology appointment, when patients often feel bombarded by information and go into shock, Goulart said. “I think the presence of a caregiver facilitates communication and brings comfort to patients when discussing these matters,” he said. “The communication has to happen between the patient and the doctor, but if you come with a caregiver, they may have more emotional stability to digest information and take notes and help the patient with their questions.”
- Prep for the visit beforehand (don't forget pen and paper to take notes!). Brainstorm questions and concerns that you might have with a friend or partner beforehand and bring a list with you. “Don’t be shy about putting your agenda out there,” said Dr. Tony Back in a video interview. “When you walk into the doctor it’s great to have a list with a couple of things on it and say, ‘Here are the things I want to talk about.’ And if you do that at the beginning of the visit instead of waiting until the end, you’re more likely to get your big questions answered because the doctor will know how to allocate time during the visit so they’ll spend time on what you’re really worried about.”
- Take a breather. This is good for both patient and doctor, Back said in an ASCO Post. “Pausing every few minutes during the conversation with patients to gauge how much they are absorbing … is a good communication skill to adopt,” he said. He also advised patients to stop the conversation for a moment if they’re feeling overwhelmed by too much technical information.
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets@double_whammied. Email her at firstname.lastname@example.org.
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