Jeopardy host Alex Trebek died Sunday of pancreatic cancer, over a year after he was diagnosed with stage IV cancer. NBC News said he died at 80 “after a battle with cancer.” CBS News implied it was a battle that he lost.Trebek himself used similar language to describe his future plans when he was diagnosed with the disease back in March 2019. “I’m going to fight this,” Trebek said. “I’m going to keep working, and with the love and support of my family — and with the help of your prayers also — I plan to beat the low survival rate statistics for this disease.”
When it comes to discussing this disease, many people use words like battle, fight, survive and beat — language that would not be out of place when describing a war zone.
At the time of Trebek’s diagnosis, well-wishers took to social media offering messages of support to him that often used this pugnacious language. Indeed, words like “battle” and “fight” often arise when a celebrity or other public figure discloses a cancer diagnosis. That was the case when Sen. John McCain, who died in August 2018, first revealed he had been diagnosed with a primary glioblastoma, the same aggressive form of brain cancer that killed former Vice President Joe Biden’s son Beau and Sen. Edward Kennedy, a Democrat from Massachusetts. At the time of McCain’s diagnosis, supportive tweets and statements from politicians and other dignitaries referenced this idea of cancer as a war or fight to be won, while also acknowledging McCain’s stellar career and the service he had given to this country. House Speaker Paul Ryan referred to McCain as a “warrior.” Others, including former Presidents George H.W. Bush and Barack Obama, referenced McCain’s service to the country, including his experience as a prisoner of war during the Vietnam War. When it comes to discussing this disease, many people use words like “battle,” “fight,” “survive” and “beat” — language that would not be out of place when describing a war zone. Of course, in this context it represents a person’s stamina and state of mind, and optimism. But without knowing whether the person was comfortable with a word like “fight” to show their will to go on living and their resilience, as Trebek was, you may want to think twice before using it. When my grandmother was diagnosed with cancer in December 2013 at the age of 83, I initially figured that she would “fight” it valiantly. After all, this was a woman who had already “beaten” cancer twice before — to say nothing of how fervently she looked after my family, including my grandfather, who is wheelchair-bound. But after one round of chemotherapy, my grandmother decided to forego treatment and eventually entered hospice care. When she died about five months later, I struggled with her decision not to continue receiving chemo after that first round. A selfish part of me privately felt like she had given up and “let cancer win.” I wasn’t alone in how I thought about cancer.
The author and his grandmother, Beverly Passy, around the time of her cancer diagnosis in 2013
Courtesy of Justin McCallum
For some cancer patients and their loved ones, these “battle” metaphors are comforting, said Len Lichtenfeld, deputy chief medical officer for the American Cancer Society. “The perspective for a lot of people is that you’re entering a battle, and you’re trying to deal with a foe you would rather not have to consider,” he said. But “battling” cancer may hit the wrong note for some patients and their loved ones, just like “sufferer” or “victim” is rejected by people who have other chronic or aggressive diseases. Hundreds of thousands of people die from cancer in America every year — and many of those who die “fought” the disease extensively. In 2020, there have been an estimated 1.8 million new cancer cases diagnosed in the U.S. and more than 600,000 Americans died of the disease, according to the American Cancer Society. The five-year survival rate for stage IV pancreatic cancer, which Trebek was diagnosed with, is just 3%. “We still lose too many people to cancer,” Lichtenfeld said. “If things work out and people do well, are they any more a hero than somebody who did everything they needed to do, but unfortunately the disease was stronger than they were?”
‘We still lose too many people to cancer. If things work out and people do well, are they any more a hero than somebody who did everything they needed to do, but unfortunately the disease was stronger than they were?’
— — Len Lichtenfeld, deputy chief medical officer for the American Cancer Society
The metaphor can be disconcerting even for individuals who go into remission. Krystle McGrady, a social worker who lives in Colorado, was diagnosed with Hodgkin lymphoma at 16. She initially went through six months of chemotherapy followed by radiation treatment. When that was unsuccessful, she had a stem cell transplant. After roughly two years, her cancer went into remission — and it was only then, she said, that people began to use these battle-like metaphors around her, something that made her uncomfortable. “It was really uncomfortable for me because it made it seem like I had some sort of choice in the matter,” she said. “This is what I had to do if I wanted a life.” Over a decade later, McGrady now works with cancer patients, and she said she consciously avoids using such terminology — particularly when it comes to the word “survivor.” “Treatment isn’t necessarily a cure,” she said. The “battle” language can make having cancer seem like a one-time event that the patient controls, then moves on from. The reality isn’t so simple. For a growing number of people diagnosed with cancer, advancements in medicine have made living with it closer to having a chronic condition, Lichtenfeld noted. Don’t miss: Why some CEOs are finally treating mental health days as sick days The language used when talking about cancer doesn’t just have an emotional impact on people — it can also influence how they make choices surrounding treatment and medical care. A 2015 study compared women’s reactions to different terminology used when diagnosed with ductal carcinoma in situ (DCIS), a condition that’s considered to be the earliest form of breast cancer. Women who were initially told that they had “abnormal cells” and then later found out they had “pre-invasive breast cancer cells” were more likely to choose treatment over “watchful waiting.”
Using a metaphor like ‘journey’ takes into account patients’ ability to choose, how treatment may be short- or long-term and how the going may not always be so easy.
As the study points out, research has shown that some over-diagnosis and over-treatment of breast lesions such as DCIS does occur — though evidence shows screenings to detect breast cancer also reduce the number of fatalities caused by the disease. “Even minor alterations in terminology can change the way we feel or behave in the face of cancer,” Anne Moyer, a professor at Stony Brook University, wrote in Psychology Today. In place of such war-themed language, some have suggested using the “journey” metaphor or allowing the person with cancer to define their own situation. The travel-themed metaphor takes into account patients’ ability to choose, how treatment may be short- or long-term and how the going may not always be so easy. “The journey metaphor does not countenance such concepts as winning, losing, and failing,” Gary Reisfield and George Wilson from the University of Florida wrote in a 2004 article in the Journal of Clinical Oncology. “Rather, there are only different roads to travel, various avenues to be explored, and, always, there are exits.” That said, it is also important to be careful about casting people with cancer as “inspiring” figures or “angels.” Putting them on a pedestal can also be discomfiting. Cancer patients are still people — they want to share in life’s more mundane experiences. As McGrady points out, she made many good friends and got to have plenty of rewarding life experiences after her diagnosis. Loved ones shouldn’t forget to continue talking about the small things in life or be afraid to discuss their own happy life events. It took me a while, but I’ve come to terms with my grandmother’s choice. Her cancer — carcinoma of unknown primary, a form of cancer in which the location in the body where the disease began isn’t known — has an average survival time of nine to 12 months, according to data from the American Cancer Society. Today, I see my grandmother’s decision to end treatment as remarkably sagacious. With her prognosis in mind, she ultimately chose to spend her remaining time with my family in comfort, rather than endure uncomfortable treatments that may not have given her much more time in the end. Who knows? Had my family pushed her to “fight harder” or to try to “battle” cancer, she might have lost that precious time with us.