When talking to or about people with cancer, words matter. Words can provide tremendous comfort. They can let someone know you care, offer encouragement, or provide hope or inspiration. Even saying, “I don’t know what to say, but I’m here for you,” is honest and supportive and can let a person with cancer know they are not alone.
But sometimes, words can also hurt. They can increase fear or anxiety, confuse, or even make people feel to blame for having cancer. Saying that cancer was part of the “plan” or implying that someone did not eat right or exercise enough as a reason for their diagnosis can make someone feel guilt or pain. While we know that smoking is responsible for many lung cancers and that the human papillomavirus (HPV) can lead to certain types of cancer, such as cervical cancer, getting cancer is never a person’s fault. In fact, research has proven that most cancer is caused by random mutations, or changes, in our genes.
Because words have such an important impact and can profoundly shape a person’s outlook, it’s important to think about how your words, even unintentionally, might make a person with cancer feel. Cancer.Net provides trusted, compassionate information for people with cancer and their families and caregivers so they can make informed decisions and be true partners in their cancer care. Our focus has always been patient-centric; excellent cancer care is truly collaborative and built on good communication, mutual respect, and knowledge. In this framework, it’s important that we think about how we talk about cancer.
Cancer is a disease, not a military operation
Since the National Cancer ActHow the National Cancer Act Has Made a Difference in Cancer Care 50 Years Later was signed in 1971, we have been united as a country in our “war on cancer.” We have invested resources and learned so much. We have made significant progress in these last 50 years and have doubled overall cancer survival in the United States. Yet there are still many people with cancer who are not cured from their disease despite following the best medical advice available to them, taking care of their bodies, and surrounding themselves with supportive and loving family and friends.
When talking about cancer, it’s important to consider the words we use in describing the experience. For example, there are some people with cancer for whom being a “warrior” is empowering. But for many people with cancer, this analogy doesn’t fit. For others, “losing a battle with cancer” isn’t appropriate, as they are enduring treatment and trying to survive each day. Other people think about their cancer as a “journey,” but for some people, a journey should be an enjoyable trip—not a cancer diagnosis!
I think it’s useful to think about cancer as a story. What are the circumstances that led to the diagnosis? What happened at the time of diagnosis, and what has happened since that time? For some people, their time in treatment might be short, and most of their “story” is about dealing with anxiety or fear of recurrence. For others, their story focuses on chronic treatment and ongoing symptoms from their disease. It’s important to remember that some people are in remission because treatment eliminated cancer from their bodies, not because they “fought” courageously enough or were endlessly positive.
Using clear language when talking about cancer
When talking about cancer, it’s also important that we use words that are straightforward. Particularly in cancer diagnosis and treatment, certain medical words and terms can be confusing. For example, a positive biopsy means that cancer is present, whereas a negative biopsy means the opposite. Similarly, when talking about treatment, we shouldn’t say the patient progressed (again, here it can be confusing—progression means the cancer has worsened). Instead, we should say the patient’s tumor grew.
Words like “tumor,” “nodule,” and “mass” can themselves be ambiguous when we’re talking about cancer. When a doctor says that there is a mass in the lung, for instance, they may be avoiding the word “cancer,” hoping to decrease their patient’s fear. But, in fact, using this wording may create more confusion for the person, who may be left thinking, “Do I have cancer in my lung or not?”
Descriptors like “advanced,” “stage IV (4),” and “metastatic” can also convey differing expectations of prognosis, or the chance of recovery, and hope. Sometimes, people equate stage IV cancer with the end of life, when in fact, some people with stage IV or metastatic disease can live for years on long-term treatments.
For cancer survivors, the terms “cure” and having “no evidence of disease,” or NED, can convey very different meanings. People with cancer and their families often ask if they are cured. “Cure” means that there are no traces of cancer in the person’s body and implies a guarantee that the cancer will never recur, or come back. Doctors often use the term “no evidence of disease” when there is no physical evidence of disease on examination or imaging tests after cancer treatment. “No evidence of disease” means the same thing as a complete remission or a complete response, but it does not mean that a cancer is cured.
Cancer happens to someone, and that person is so much more than cancer
For all of us, it’s important to remember that a person with cancer is never just a “breast cancer patient” or a “leukemia patient.” Cancer happens to a person who has a whole life outside of cancer. A cancer diagnosis may resonate in a person’s life in a different, deeper, and often more pervasive way than the diagnosis of a heart condition or other disease, but cancer alone doesn’t define a person.
Words can have a profound effect. We’ve learned that words can lighten the burden of a cancer diagnosis and provide comfort, but they can just as easily confuse and create anxiety for a person with cancer. We can all do a better when talking about cancer. The idiom to “walk a mile in their shoes” reminds us to be thoughtful and to practice empathy when we are talking to and about people with cancer.