I am Howard. I have cancer. Please don't call me a cancer survivor, a hero, a warrior, a conqueror, a victim.
When we talk about cancer and when we talk to people about their cancers, we betray our fear of this potentially life-ending disease. Friends and family may call the person with cancer a "survivor" to suppress their personal terror or discomfort about this condition, or thinking cheerleading may somehow boost the morale of the person with cancer.
The language of war is rife in Cancerland. We may call people with cancer "warriors," who fiercely and "bravely" "attack" cancer, although they may not view cancer as a "battle" at all, and may resent the war metaphors and don't accept the "hero" label. Admittedly, the military language gets us away from the discouraging phrase of "cancer victim," where the person enters the victim culture, helplessly facing the Big C.
The American Cancer Society comes to the rescue with its symbol, the "Sword of Hope," a , the slayer of dragons, symbolizing cancer. These symbols and language are powerful influences on how we view cancer. They may not help everyone with cancer and may in fact hurt some.
I got into a debate the other day with a friend who, like me, is on active surveillance for prostate cancer and was using the phrase "cancer survivors" for men like us on active surveillance for prostate cancer, meaning we didn't have any radical treatment. The term "cancer survivors" irritated me. It seemed melodramatic for people who had not wrestled with cancer, other than maybe psychologically. It may have fit him, but not me.
"What have we survived?" I asked. The worst I've experienced is a biopsy. No chemo. No radiation. No drugs. No treatment. That's the program for AS.
Biopsies carry risks for infection, even sepsis, and potentially for pain. I've skated through five biopsies with no problems. Do those needle biopsy pricks make me a biopsy survivor or even a biopsy hero? Not in my mind.
I don't consider myself a cancer survivor, either. Cancer has not threatened me. My tumor and I have agreed to a peaceful co-existence. I won't bother my tumor, unless "he" (it is a male gland) bothers me.
Cancer terms evolve
This exercise led me down the rabbit hole to learn more about the vocabulary of cancer.
I found that until the mid-1980s, people diagnosed with cancer were called cancer patients or cancer victims.
Patient may sound neutral. But when they call you a cancer patient, you're being labeled. It may be a short walk down the path of depersonalization to being "the prostate" in Room 222.
The origin of "patient" gives me pause. It comes from the Latin patiens, a sufferer. Picture a patient passively awaiting sage counsel from the physician. This is hardly the idealized picture of a person engaged in informed decision-making as an equal to the physician.
Victimhood is far worse. This conjures up the image of cancers or other diseases attacking and victimizing us. It also has a passive feel. Something is happening to you. Something sad and bad. The Big C is assaulting you. You have no control. You are to be pitied. Victim is an isolating term, separating you from the healthy well.
The cancer survivorship movement attempted to change this in the mid-1980s. It was the beginning of a well-intended effort to redefine cancer and our relationship with it. But it also suggested an advertising campaign, moving Coke to New Coke.
Behind it was Fitzhugh Mullan, MD, a physician who had been treated with surgery, chemotherapy, and radiation for primary mediastinal seminoma, a cancer deep in his chest. He wrote a 1982 book, and then an influential 1985 essay in the New England Journal of Medicine, "." He aimed to transform cancer victims into cancer survivors.
It was a step forward, but in my view the pendulum swung too far in the other direction.
"Survivor" suggests someone who has been through an arduous hero's journey, engaging the cancer in battle, enduring the horrific treatments to attack cancer, getting past toxic side effects and coming out the other side having conquered the killer.
Mullan's survivorship concept was a winner over the trap of victimhood. He was the founding president of the , a nonprofit advocacy group that defined survivorship as covering everyone from the time of diagnosis of cancer through death.
The Coalition expanded the definition of survivor to include everyone touched by the cancer diagnosis, such as family, friends, and caregivers. The American Cancer Society, the National Cancer Institute, and the American Society of Cancer Oncology all signed on with the Coalition's definition along with most of the rest of the cancer establishment representing charity and research.
Women with breast cancer, who have been true pioneers in patient advocacy and fund-raising following the script created by advocates for people with AIDS, readily accepted this definition. Picture the confident, resilient breast cancer survivor with her friends and family on a fun run, a walkathon, a dragon boat race, and other events wearing pink ribbons helping to raise funds.
Rejecting the 'S-word'
Still, not everyone tagged with the "C-word" feels comfortable with the "S-word." Research shows that not all of us with cancer apply the word survivor to ourselves. Some like me with low-risk prostate cancer and even those with advanced cancers think it is over the top. Others with highly treatable skin cancers probably are puzzled if someone calls them survivors. Some with cancers not responsive to radical therapy may feel survivor does not apply and may feel defeated about "losing the battle."
In 2016, University of Adelaide psychology researchers Sze Yan Cheung and Paul Delfabbro found in a that a significant percentage of people with cancer reject the survivor identity. They said that "for a substantial group of individuals, 'cancer survivor' is not a title earned upon receiving a cancer diagnosis or completion of treatment, but an identity that may be embraced in time after deliberation."
Incidentally, they found that more women with breast cancer accept the identity than men with prostate cancer. "Identification as 'cancer survivor' was found to be highly prevalent within the breast cancer community (77.9 %) and least among individuals diagnosed with prostate cancer (30.6 %)," the researchers noted.
Anne Katz, PhD, RN, nurse counselor at the Manitoba Prostate Centre in Winnipeg and author of 13 books, including noted, "The term 'cancer survivor' is one that has been rejected by many who have completed treatment and don't wish to see themselves defined by their history of illness. There are many definitions of survivorship, the most commonly used states that a person is a survivor from the time of diagnosis. This bothers a lot of people. ... The issues for someone who is just diagnosed is 180 degrees different from someone who was treated 10+ years before ... and yet by definition they are considered survivors. Some suggest that this minimizes the experiences of diagnosis, treatment decision-making, acute treatment, etc."
"Defining someone as a survivor when they have completed acute treatment is also problematic as they may face many years of adjuvant treatment (women with hormone receptor-positive breast cancer or men with advanced PCa on ADT (androgen deprivation therapy) are two examples."
When I asked Rick Davis, the founder of the nonprofit virtual support group organization, , about survivorship, he invited me to attend a meeting of Speaking Freely, a men-only, all-cancer group that considers issues beyond actual treatment. He asked me to attend a meeting of a virtual group to discuss the language of cancer, About a half dozen men showed up via video call, phone call, or chat room with a range of prostate cancers, from those on AS to those with advanced cancer, plus one man with advanced colon cancer.
Battle cry
The group discussed the pervasiveness of war language in cancer. President Nixon, encouraged by the American Cancer Society, formally declared a "War on Cancer" in 1971. Along with the War on Drugs, also declared nearly 50 years ago, they're America's longest-lasting wars.
The War on Cancer was supposed to show our determination to defeat this dire disease as we would vanquish any enemy. It was supposed to be a Manhattan Project to cure cancer. The theory was that old-fashioned American wizardry and optimism could solve any problem if you threw enough cash at it and put the brightest minds to work on the solution.
Bad news. The War on Cancer drags on with no end in sight.
Ironically, the U.S. Defense Department, the original "Masters of War" in the 1990s, became a first on breast cancer and then prostate cancer as activists forced Congress to cough up more funding in a new way. The Pentagon, which has an army of topnotch researchers, saw this as a way for warrior researchers to build bridges with the civilian community to garner good PR and help some people.
There's another angle that ought to be noted. War can cause cancer. During the Vietnam war, the U.S. military used the herbicide Agent Orange to destroy the jungle and expose a stealthy enemy and make him vulnerable to attack. Following the law of unintended consequences, American soldiers were exposed to the defoliant and years later developed cancers and other diseases. Since 1991, the Veterans Administration has paid compensation to military men and women who are presumed to have developed prostate cancer, lung cancer, Hodgkin's disease, and several other cancers and other diseases such as Parkinson's and diabetes as a result of Agent Orange exposure. Blood money for the wounded warriors.
Rich Jackson, the moderator of the Speaking Freely group and also support groups for the Reluctant Brotherhood, has undergone radiation and ADT for advanced prostate cancer. He is a Vietnam era veteran from Norfolk, Virginia, but did not serve in Vietnam.
He is a critic of the language of cancer: "Cure is not a word that is used around me. Survivor is not a word I apply to myself. War metaphors are not good. In war, someone loses."
"Sooner or later I will die, by default cancer wins. Not interested. Fight metaphors [are] also not good. When we lose, that means we didn't fight hard enough. I think most of those terms and phrases are for the 'non-cancer' folks so they can feel better, not for us."
I call myself a conscientious objector (CO) to the so-called War on Cancer. (I also was a CO during the Vietnam war.) I am on active surveillance, where by definition, no "heroic measures" are used in our protocols. We are cancer pacifists. We are contrarians on the cancer-treatment assembly line.
Richard Wassersug, PhD, a long-time prostate cancer "patient/survivor" and research scientist at the University of British Columbia in Vancouver, attended the Speaking Freely group. I subsequently spoke with him one-on-one. Among the things he studies is the language of cancer. He said rather than a cancer survivor, he thinks of himself as a "cancer treatment survivor" since he had no overt symptoms of the disease itself, but has lived with prolonged adverse effects of the treatment.
Unintended consequences
Wassersug co-authored a about ending the use of war language in cancer. He and psychologist David Hauser, PhD, of Queens University in Kingston, Ontario, who has researched the impact of metaphors on thinking said, "When people label cancer as an enemy, preventative behaviors that involve limitation and restraint -- such as eating less red meat and not smoking -- get disregarded or dismissed because fighting involves little self-control."
"We conceptualize war as a situation in which we have no choice but to engage a hostile force that must be attacked in order to be stopped. Self-limitation is not part of that equation. Recent research suggests that these metaphors can indeed backfire."
Jamie Aten, PhD, another attendee, was diagnosed with stage 4 colon cancer at age 35 and underwent oral chemo twice a day, radiation five days a week, and then surgery to remove a significant portion of his colon. Another six months of drip chemotherapy followed.
He is a psychologist and an expert in disaster psychology at Wheaton College in suburban Chicago. He is a man of faith who found his faith sorely challenged as he went through treatment. He said he nearly died because his physician misinterpreted statistics about his disease.
Aten said that when a storm like Hurricane Katrina passed overhead, everyone below who made it though is considered a survivor. During his cancer ordeal, he felt the disease was like having Katrina hang over him for a year. "When I was going through treatment, I never felt like a survivor," he said.
Aten wrote a book about his experience, . He also gave a first-person account of his cancer experience in the Philadelphia Inquirer.
The debate over survivorship reminds me of series on HBO in which Larry David has a dinner party attended by both an elderly Jewish man, who had been in a concentration camp during the Holocaust, and also a failed contestant on the TV reality show "Survivor." The men dueled over who was the real survivor. One complained he had missed his regular gym workout while competing in 100+ degree weather in Australia. The other endured 45-below-zero temperatures in a Nazi death camp. Who was the survivor? In my cancer journey, I feel like the reality show "Survivor," not the concentration camp survivor.
The Australian researchers said healthcare professionals and researchers need to be cautious when using the term "cancer survivor" so as not to alienate anyone who has been diagnosed with cancer, but does not identify with it.
Similarly, as a medical journalist or as a regular person I need to ask people what they think about their cancers or other diseases. Do they consider themselves survivors, patients, or something else. I can gain some insight from what they call themselves and how they think about their disease.
They should afford me the the same opportunity. I am just a man living with cancer.
Readers, what do you think about the language of cancer or other diseases? Has "survivor" outlived its usefulness? Are there words you think we should avoid? Are there better ones we can use?