From the 'Big C' to 'Cancer'

In the introduction to his 2015 book, "The Death of Cancer," Dr. Vincent T. DeVita, Jr., an oncologist at Yale University, described his Aunt Violet's ovarian cancer diagnosis in the 1940s. "It was such a dreadful diagnosis, in fact, that many people including my parents, couldn't bring themselves to utter the word. If they did, it was in a whisper -- 'cancer' -- as if there were something shameful about it. Or maybe it was superstition, the fear that merely saying the word out loud was tempting fate, like waving a red cape in front of a bull," he writes.

This was a common reaction to cancer for most of human history, says Dr. Otis Brawley, chief medical and scientific officer for the American Cancer Society. "Even when I was a kid in the 1960s, people would call it the 'Big C' and whisper it."

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Dr. Claire Verschraegen, professor of medicine and director of the Division of Medical Oncology in the Department of Internal Medicine at the Ohio State University College of Medicine, says ignorance was largely to blame for this fear and stigma that developed around cancer. "Limited knowledge of cancer biology and very noticeable ravages done to the body created a taboo. Lumps and bumps, which were often ulcerated, excruciating pains and certain death all instilled fear of these diseases. Fear forms the perfect formula for shrouding a misunderstood disease into a taboo," she says.

But a funny thing happened in the second half of the 20th century. As scientists gained a better understanding of the disease, how it works and how to detect it early, this boogeyman of diseases began to lose some of its terrifying power. To be sure, "a cancer diagnosis is [still] one of the most frightening things that can happen to a person in their lifetime. And there will always be a stigma around cancer as long as people are dying," Verschraegen says, but it started to become something people could talk about more openly as the 1960s gave way to the 1970s and beyond. As survival rates began climbing in the 1970s and 1980s with better detection technologies and treatments, the diagnosis subtly began shifting from one of certain death to one that patients had at least a hope of surviving.

Mass media and the power of the celebrity confessional have also been helpful in changing the way we look at cancer. Brawley says actress Shirley Temple was the first famous person to "go public" when she was diagnosed with breast cancer in the 1960s. In 1974, Betty Ford, wife of then-president Gerald Ford, made her breast cancer diagnosis and treatment very public, which resulted in more women getting screened. "Betty Ford started a large movement toward mammography," Brawley says, because she talked about how a mammogram led to the discovery of her breast cancer. "Even now, when we look at the incidence rates of breast cancer from the 1960s onward, we see what's called the 'Betty Ford Effect.' She artificially raised the incidence of breast cancer because a whole bunch of women came out and got mammography." (She had a similar impact on the stigma surrounding addiction by being open about her own substance abuse struggle.)

In 1965, Brawley says "the American Cancer Society worked with 'Guiding Light' to put a pap smear into the soap opera to make it a little more culturally acceptable." Prior to then, pap smears, which are used to detect cervical cancer, were "not something that polite ladies would do," so changing the messaging around this simple test via a popular television show led to thousands of women getting pap smears. Normalizing behaviors that could prevent or screen for cancer helped shine a light into a previously dark arena.

In addition, research and funding initiatives helped demystify cancer. Brawley says the signing of the National Cancer Act in 1971 led to the development of cancer centers and cancer registries across the country "so we could actually figure out what was going on." This "really started putting momentum into cancer and people started saying it more and more." In the late 1970s and the 1980s, mortality rates from cancer started to level off, and the conversation began to include the word "cure" from time to time.

By the 1990s, America was in a decade of cancer activism, with many people taking a page out of the AIDS movement's playbook to lobby for more funding for disease research and to help get the word out about prevention and screening. "Grassroots events that provide avenues of education and fundraising have played a major role in bringing the word 'cancer' out of the shadows," Verschraegen says. She cites breast cancer awareness as a prime example of how the conversation around cancer has changed. "The American Cancer Society's Making Strides Against Breast Cancer [walk event] has raised millions of dollars for breast cancer research and services. The pink ribbon has become undeniably recognized nationwide as a symbol of breast cancer awareness. By employing mainstream advertising methods and engaging the community, you create an environment where people don't feel alien for saying out loud, 'I have breast cancer.'"

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Although by and large, the taboo around cancer has faded, Brawley says a stigma still exists in some communities, largely because of a lingering lack of knowledge. "The stigma is in people who are less educated or less sophisticated about cancer and among those whose experiences with cancer have been overwhelmingly negative." He says when some patients tell their families of their diagnosis, they're isolated because some people still falsely assume the disease is contagious.

Some patients also hide their diagnosis because they feel ashamed that they brought it on themselves. "Special shame issues come up around lung cancer," Brawley says. "I'm not one to blame the smoker, I blame the tobacco company. But [people] say, 'Oh, he shouldn't have smoked.'" But Brawley points out that "20 percent of people with lung cancer never smoked."

Fear of what may happen can also lead those with less knowledge to avoid getting help when they find a disconcerting lump or have a strange symptom. Brawley explains the thinking as, "when Aunt Sally felt a mass in her breast, she got diagnosed with cancer. She died six months later. I feel a mass, so I'm not going to go get diagnosed because I don't want to die." But avoiding the problem isn't the answer.

If you've been recently diagnosed with cancer and are feeling stigmatized or afraid, Verschraegen encourages you to "find out what resources are available through your cancer center or by contacting your local American Cancer Society office. There are wonderful programs available such as the Look Good Feel Better program, which helps patients understand the changes occurring to their bodies." She also recommends speaking with other patients and survivors of your type of cancer. Support groups can be enormously helpful in connecting you to other patients and survivors who are dealing with many of the same issues you are. The insight and experiences others can share may help you feel less isolated and vulnerable.

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"Knowledge is power," Verschraegen says, and that's true both individually and as a society. As we build on the knowledge gained over the past century, cancer should continue to lose its stigma. Case in point: Brawley says the discovery that there are certain kinds of cancer that don't need to be treated immediately because they're unlikely to pose a threat to the patient during his or her lifetime is redefining how we think about cancer as a whole. For example, he says we've learned that nearly one in four men over the age of 60 could be diagnosed with prostate cancer, but many of these cancers are "not destined to grow, spread and kill," which has altered how some cases are treated. Instead of always opting for aggressive treatment, in some cases the better answer is to watch and wait. "We're going from a mid 19 ^th-century to a 21 ^st century definition of cancer. The 21st century definition of cancer has some, pardon the phrase, 'good cancers' and 'bad cancers.'" Not all need to be treated the same way, and the more individualized treatment and diagnosis become, the less frightening cancer will become.

Elaine K. Howley is a freelance Health reporter at U.S. News. An award-winning writer specializing in health, fitness, sports and history, her work has appeared in numerous print and online publications, including AARP.org, espnW, SWIMMER magazine and Atlas Obscura. She's also a world-record holding marathon swimmer with a passion for animals and beer. Contact her via her website: elainekhowley.com.