Communicating About Cancer: 5 Common Terms That Are Frequently Misunderstood

In cancer language, it’s not unusual for the medical or scientific meaning of a word to be different from the way the same word is understood in everyday language. Sometimes the difference reflects a focus on populations vs. individuals, and in that case, the context in which the term is used is critical. Media reports often add to the confusion by failing to clarify these differences.

Here are five frequently used terms about cancer research and treatment, and some observations on how their meanings may be understood differently by the speaker or writer and his or her audience.

Cure

In stories about celebrity experiences with cancer, the celebrities sometimes claim that they are “cancer-free” after treatment. But is it really possible to know that? Is it possible to totally eliminate or “cure” a person’s cancer?

At scientific meetings, physician speakers occasionally comment that many patients being treated for breast cancer today are being “cured.” They apparently mean this on a population level, i.e., with treatment, fewer overall will die from breast cancer than otherwise would.

But the catch is that for an individual patient, even when the intent of treatment is to remove any cancer cells still in the body after surgery, there is no way today to verify that cancer has been fully eliminated. Even the term “no evidence of disease” does not rule out the possible presence of microscopic disease that we can’t detect with any test available today.

Palliative care

Palliative care is often confused with end-of-life care, including in some reporting about cancer. This can be a disservice to patients, who may be reluctant to access care that could be very helpful for them because of this misunderstanding.

Mayo Clinic defines palliative care as “specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness, no matter the diagnosis or stage of disease.”

Some have suggested that a better term is needed. It might help to have a term that stresses the specialist nature of this care, which can be a valuable way to address particularly problematic symptoms, bringing in knowledge and expertise beyond what the main physician treating the individual might be able to offer.

Patient-centered care

When I first heard this term, it really had me scratching my head. What kind of quality health care wouldn’t be considered patient-centered, and why would anyone want it? A related concept is patient-centered outcomes.

Yet, these terms do represent an evolution that may be underway/has been underway for a while in the thinking about health care. As I understand it, the difference if we had truly patient-centered care would be a shift in medical decision-making from a focus on populations to a focus on the individuals being cared for. This definition from NEJM Catalyst sums up the goals of patient-centered care:

In patient-centered care, an individual’s specific health needs and desired health outcomes are the driving force behind all health care decisions and quality measurements. Patients are partners with their health care providers, and providers treat patients not only from a clinical perspective, but also from an emotional, mental, spiritual, social and financial perspective.

These certainly seem like desirable goals. Sometimes the whole concept pushes too far and becomes more about marketing than caring for people, but this basic definition seems to represent very important goals worth striving for.

Prevention

Cancer prevention is another term that is meaningful and important in talking about populations, but does not translate well to individuals. At the population level, we can take measures such as regulating environmental contaminants that result in fewer people getting cancer. In that scenario, the regulatory measures “prevent” some cases of cancer — it just isn’t possible to know which individuals would have gotten cancer and now did not as a result of the preventive action.

As individuals, we can only take actions that reduce our risk of cancer. As an example, cigarette smoking is known to increase the risk of a number of types of cancer. Not smoking, therefore, is a very important way to reduce our risk. However, not smoking does not guarantee that we won’t still get cancer.

Survival

The term “survival” in the context of cancer can be especially confusing for patients.

The concept of “relative survival,” usually referring to 5-year survival, is often used to provide a general benchmark of life expectancy after a diagnosis of a particular type of cancer. This concept simply refers to being alive after a cancer diagnosis, whatever the stage of cancer. It doesn’t mean that an individual is “cancer-free” or even that they’ve completed treatment if their diagnosis was an early-stage disease.

It’s clearer for patients when we understand that, while relative survival can be helpful in tracking progress at the population level over years or decades, for many reasons, it may not have a lot of relevance for one person being treated today. For example, these statistics usually are based on people who were treated a number of years ago, and there may be better treatment options available now. In addition, factors specific to the individual, such as other health conditions or differences in access to timely care, can have a significant impact.

So, there are five of the cancer terms that are very frequently used and have different meanings in the medical or scientific context than they do in everyday language. A lot of misunderstandings can be avoided when speakers or writers are clear about what the terms mean in the context in which they’re being used.

Lisa DeFerrari is a patient advocate.

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