At a Loss for Words When Discussing a Loved One's Cancer

AFTER JEN SOTHAM’S MELANOMA metastasized, her friends organized a candlelight yoga session to show support, posting that it was in “honor of Jen, who has been diagnosed with terminal cancer.”

That stung. “I don’t think she meant to be insensitive,” Sotham, 42, says of the friend who wrote the post. “Historically, yes, melanoma has been terminal. That’s a heavy thing to say about someone who has just been diagnosed.”

While she doesn’t want people to sugarcoat her disease, Sotham would prefer that, when talking about cancer, friends and family call things what they are: for instance, “stage 4,” rather than “terminal.” Advances such as precision medicine are helping people live with cancer, the Long Island resident adds, so friends who want to be supportive should research their loved one’s disease and choose words that fit that individual.

Well-meaning people often struggle to choose the right words. Even if adopting the terms most commonly used in our culture, should they choose to talk to friends diagnosed with cancer as if they’re going into battle, or as if they’re embarking on a journey? Should they name the disease — cancer — or speak in euphemisms?

The truth is that there is no one-size-fits-all way to talk about cancer. People with the disease vary widely in how they talk about it, so caregivers and other friends and family members should listen carefully to the words those loved ones use and mirror that language, experts say.

“There is no single right answer. What becomes critical are not your words, but your capacity to listen,” says Judith Kelman, founder and director of the Visible Ink writing program at Memorial Sloan Kettering Cancer Center (MSK) in New York City.

FIGHTING WORDS

People’s first instinct is often to do or say what they’d prefer in similar circumstances, but Kelman, who has volunteered with Visible Ink for nine years, has learned that this tactic does not always work. When she asked a group of people with cancer for the best thing someone had said that really helped them get through their illness, one person recalled, “I was feeling horrible and somebody looked at me with affection in their gaze and said, ‘You look terrific.’ Another person in the same group said, ‘The worst thing you can say is, ‘You look terrific.’”

While some like to refer to cancer as a “journey,” others are more in the “#&*! cancer” camp. Not sure which group your loved one with cancer falls into? Just ask. Mary Strauss, L.C.S.W., oncology licensed clinical social worker at Smilow Cancer Center at Yale-New Haven in Connecticut, read that one person with cancer said, “Unless you’re sending me on a cruise, please don’t refer to it as a ‘journey.’”

Since the term “War on Cancer” worked itself into the lexicon in the 1970s, battle terms have become commonplace when talking about cancer. Obituaries often say that someone “lost their battle with cancer after a brave fight.”

“There are patients who really love the language of fights and war, because it gives them power,” says Don Dizon, M.D., clinical co-director of gynecology at Massachusetts General Hospital in Boston. “I think for others, it’s not (empowering). They don’t see disease as a war. They see disease as a human condition.”

Brett Jones, 30, of Berkeley, California, lost a close family member to cancer and says he feels that using combat language hurts survivors.

“We reacted negatively to battle terminology,” he says of himself and his wife, Mallory Casperson, a cancer survivor. “We both had cancer in our families. When you know someone who has lost the battle, you can’t use that language. It’s so much all or nothing.”

“Cancer takes so much control away,” he adds. “When the words we use with other people take more control away from them, it just exacerbates the problem.”

Even the word “survivor,” which some feel is a more empowering term than “patient,” can seem hurtful to someone with incurable cancer, says Strauss. She prefers the term “thriver,” because it implies quality of life.

Khevin Barnes, 66, who was diagnosed with breast cancer while living in a Zen center in Hawaii, sees cancer as part of life’s adventure, saying, “You can either ride the wave, or you can fight it.”

The war metaphors don’t work for the Vail, Arizona resident, as he sees himself as being on an “expedition” and as a “conscientious objector.”

When he developed cancer, it gave his life a new purpose. He had retired from his career as a stage magician, but after his diagnosis, Barnes, a CURE® blogger, launched a new business, LaughingThroughBreastCancer.com, and combined humor and magic in his breast cancer speaking tour. He doesn’t laugh at his cancer, he says, but at the craziness of life.

The stage of someone’s treatment can add another wrinkle. When she was in active treatment, Sotham preferred fighting terms, but later, when she was in better health, she felt more comfortable talking about her cancer as a journey.

There’s just as much debate about the expression “chemobrain,” which refers to the forgetfulness and trouble concentrating that can arise from treatment with chemotherapy or other anticancer drugs. Detractors feel the phrase doesn’t convey the seriousness of the condition, while others like it because it shows that they don’t take themselves too seriously. If people had a good sense of humor before getting cancer, they don’t suddenly lose it. “If they’re feeling forgetful or overwhelmed, (the term) lightens the mood,” Strauss says.

People also differ on whether they want to be called a “cancer patient,” “cancer survivor” or “someone living with cancer.” Those who don’t like to use cancer as an adjective argue that the disease should be described as something that affects them, rather than as a label that defines them.

Ultimately, word choices can affect how a patient is perceived. A pair of 2008 studies demonstrated that the term “cancer survivor” generated more “favorable perceptions,” “positive attitudes” and a “greater willingness to interact” than the term “cancer patient” among a group of college undergraduates.

The “Findings point to a potentially powerful effect of word choice on reactions to individuals with cancer,” wrote the authors in an abstract that appeared in the Journal of Language and Social Psychology. Should individual patients and caregivers be concerned about those kinds of perceptions, or only about which words bring them the most comfort? That's a personal choice.

Finally, while cancer treatment has progressed rapidly in recent years, the words people use often reflect an earlier era. With advances such as immunotherapy, Sotham points out, a lot of cancers that had a grim prognosis no longer do.

“We need to adjust our language to reflect the rapid advances,” she says. “The cancer lexicon needs to change in time with the way treatment is changing.”

FINDING YOUR WAY

Beyond choosing the right words, what kinds of sentiments should friends and caregivers offer to loved ones who have cancer? How can they know how to choose the right conversations, ask the right questions or strike the right moods? Casperson was diagnosed with Hodgkin lymphoma when she was a graduate student, shortly after her mother died from brain cancer. She realized right away that neither her peers nor her professors knew how to talk to her.

“Whether you’re dealing with cancer as a patient or a survivor, it’s a lonely process. When people say the wrong thing, it just makes it worse,” says Casperson, 30, who, with Jones, runs a web-based nonprofit for young adults with cancer, Lacuna Loft. It also hurts when people say nothing at all, she adds.

Still, if you don’t know what words to use, don’t stay away. “Most people want to know that people care about them,” says Diane Blum, M.S.W., a long-time oncologysocial worker, former editor-in-chief of Cancer.net and former executive director of CancerCare. “You can never go wrong by saying, ‘I’m thinking of you.’ The worst thing is to ignore it.”

Some people with cancer want to hear about their friends’ lives and talk about anything but their cancer, while others want to discuss every detail of their illness. If you’re not sure which your friend with cancer prefers, treat him or her like anyone else you know. Since we don’t routinely ask our healthy friends how they’re feeling, cancer survivors suggest that loved ones ask “How’s it going?” or “How’re you doing?” rather than, “How do you feel?”

If the person with cancer had a doctor’s appointment that day, caregivers can text, email, write a note or leave a phone message acknowledging that, and say, “If you want to talk, let me know” or “I wondered how things are going,” Blum suggests. That way, you’ve opened the door and it’s up to the person with cancer to decide whether to close it or open it further.

Make sure to avoid being patronizing or condescending, though, Blum says. No matter what the diagnosis, she says, people with cancer don’t want to be infantilized.

Paying attention to nonverbal cues is also important. “If you’re not watching carefully, you may be missing the cue that the person is exhausted and needs time alone or that that person just wants to sit quietly and have company,” Kelman says. “I think matching mood is part of that as well. When I’m feeling sad, I don’t want someone to try to make me upbeat,” Sotham adds. “I want to be sad. I want to feel those feelings.”

It’s okay for caregivers to be sad, show their feelings and cry in front of the person with cancer, she adds. After all, when people have cancer, they want the people who love them to acknowledge their own fears and concerns.

Ultimately, Strauss says, “Just listening and being there for someone is as important as the words that you use.”