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to live with
The issue: Battle rhetoric such as ‘fighting’ cancer is defeating patients and pushing them into brutal treatment when there is no hope of extending life. The solution: By reframing cancer not as an ‘enemy,’ patients may accept managing the disease rather than eradicating it.
The first time the surgeons rebuilt David Giuliano’s forehead they took skin from his back and bone from his shoulder blade.
The second time, titanium mesh and a flap of flesh harvested from his thigh through a monster incision running hip to knee.
Cancer has been Giuliano’s unwanted companion for 20 years. The Marathon, Ont., United Church minister was first delivered the word “malignant” in 2006. He’d felt a new lump on his temple. He imagined it was just like the other lumps he’d had cut off several times before. Harmless growths, the doctors kept reassuring him. Except this time, he went to Toronto, where he was told the lump was cancerous — always had been. Dermatofibrosarcoma protuberans, a rare type of sarcoma that spreads with tentacle-like arms beneath the skin. The earlier pathology slides had been misread.
David Giuliano (Courtesy of the United Church of Canada)
Giuliano had just been installed as leader of the United Church of Canada. They put a couch in his office; he was tired a lot. “I spent a fair amount of time lying on the couch making phone calls, during the worst of it.” He has been through dozens of surgeries, as well as radiation that, while unsuccessful in curing the cancer, caused “a whole lot of other problems” — no tear gland in the left eye, a detached retina and stroke. He has double vision from the last surgery, and permanently lost the hair on one side of his head (he shaves the other) from the radiation. His surgeons have done a “beautiful job” reconstructing his forehead, he said. “But you can only make that look so natural.”
If cancer is an “enemy”, Giuliano bears its battle scars. In the militaristic language still so often used when we talk about cancer, many might see him a “hero,” a “fighter,” a “survivor.”
Giuliano hates the battle metaphor, because it doesn’t allow people to acknowledge the range of emotions and experiences that go with cancer. “If you’re surrounded by people who are telling you, ‘you’ve got to fight,’ you think, ‘how about I rest today and fight tomorrow? How about, ‘I’m scared and I don’t want to battle?’
“And some people talk about just feeling ready to let go. They’ve battled it for too long. But that’s unacceptable. That’s seen as failure,” he said. “That’s seen as losing.”
Nowhere else in medicine is the battle rhetoric more entrenched than in cancer. And it’s defeating people.
Military metaphors can push people into accepting brutal treatments or “maximum tolerated doses” of chemotherapy when there’s little hope of extending survival. They keep people from accepting palliative treatment — care that not only eases symptoms but can also prolong life — because it seems too much like surrendering, while driving others to demand needlessly aggressive treatments for cancers that would likely never kill them.
Framing cancer as a kind of war within our bodies can also seriously harm a person’s emotional psyche. “Who wants to go to war with themselves?” radiation oncologist Edward Halperin, of New York Medical College, writes in the journal Practical Radiation Oncology. “How is it ever helpful to think of oneself as a victim who was randomly attacked and now you’re trying to kill your assailant in order to survive?”
For some, the war imagery, the determination to “hit hard and hit fast,” can be empowering, he and others acknowledge. “Some cancer patients may perceive themselves as a soldier going to war,” Halperin said. “But surely not all do.”
Studies have shown people who are encouraged to “fight” and “be positive” are more likely to conceal their own emotional distress. Researchers at University of Manitoba who surveyed more than 1,000 Canadian women with breast cancer, found those who thought of their disease in negative terms such as “enemy” and “punishment” had significantly higher levels of depression and anxiety three years out.
Dr. Seema Marwaha is an internal medicine specialist in the Toronto area. Last August, a man dying of pancreatic cancer arrived in her emergency room. He was frail, jaundiced and in serious pain, and he had come seeking one thing: a doctor-assisted suicide. “I don’t want to be remembered a loser,” he told Marwaha. “I don’t want my obituary to say that I lost the battle.”
He died a month later from natural causes, shortly after he was approved for assisted death.
“Battle language is everywhere in my profession,” Marwaha wrote in an article for Vice. And if the tone is set at the outset of diagnosis, she said in an interview with the National Post — if the message conveyed is somehow “that there’s a choice to fight or give up” — it’s hard to reframe the conversation if things don’t go well.
Too often, the language used by doctors adds insult to injury: patients “fail” chemotherapy, instead of the drugs failing them.
Fundraisers love to talk about winning the war on cancer. The cancer bureaucracy and charities exploit the cancer-as-war metaphor by urging us to “donate now” — defeat isn’t an option.
“But cancer isn’t an enemy — it doesn’t have an ideology, it doesn’t have a political agenda,” said Dr. James Downar, a critical care and palliative care physician with Toronto’s University Health Network. “It comes from within us; it’s part of the history of humanity.”
It’s also not one disease, but likely hundreds, which seriously complicates hopes of ever finding a universal, one-size-fits-all cure, he added. What’s more, the idea that the cancer switch has only two settings — cure the cancer or die — no longer holds.
“We rarely cure cancer unless we can cut it out. But things like long-term remission and disease control — these are the goals,” Downar said. “We’re getting better at controlling cancer for longer periods of time.”
In other words, learning to live with cancer.
Experts say that it may finally be possible to imagine a world when cancer becomes like a chronic disease, like diabetes or HIV. Some have gone even further. If total annihilation isn’t possible, U.S. researchers provocatively wrote in Frontiers of Oncology, then one alternative is to simply hold the line — “box-in tumour cells with a discrete-focused strategy of containment.”
Trying to drive cancer cells to extinction, they argue, leads to survival of the fittest. It wipes out the “moderates,” the cells sensitive to chemo, while leaving behind the “extremists,” cells ready to morph into even more aggressive tumours. A better middle ground between “appeasement and Armageddon,” they argue, “is containment.”
This much is true: about 60 per cent of cancer patients overall now survive at least five years after diagnosis. In the 1950s, fewer than 25 per cent did. For breast cancer, the average survival rate now hovers around 88 per cent. For most women, “the breast cancer is not going to be their length-of-life-defining illness,” said McMaster University radiation oncologist Dr. Jonathan Sussman.
Currently, there are an estimated 800,000 cancer “survivors” in Canada.
Some are living with cancers that never completely go away, like certain lymphomas and leukemia or even invasive breast cancers. The cancer hovers in the background, sometimes recurring years later in what Stanford University oncologist George Sledge once described as a game of “whack-a-mole.”
One of the best examples of cancers being managed, not cured, is low-grade lymphomas, cancers of the lymphatic systems. “There are periods where the cancer needs treatment and periods where no treatment is given,” Sussman said. Instead, people are followed closely for years, sometimes decades.
Melanomas that spread were once always lethal, with an average survival of a year or two. Today’s immunotherapies are putting a significant proportion of patients with metastatic melanoma into a controlled state, “where the thing is quiet; it’s not really advancing,” Sussman said.
Living with cancer can carry its own psychological burden. People can be plagued by fears of the cancer returning or progressing. They worry, ‘when’s the bear going to come out of the cage?’
“Part of the challenge also is doing enough,” Sussman said, “doing sufficient visits and scans so that you have a good handle on what’s happening so that you can adjust and adapt and intervene, but not overburden somebody with scans.”
Sussman is helping lead efforts to improve patient wellbeing by having family doctors and oncologists better integrate their care. Other Canadian researchers are testing exercise as a way to improve symptoms of “chemo brain,” the mental fog, and group therapy to help women with breast or gynecological cancer manage anxiety and fears of the cancer coming back.
“This is all quite new, this whole notion of kind of being in-between,” Sussman said. “It’s a bit of a limbo state, sometimes.”
David Giuliano, whose tumour announced itself again in 2015, requiring more surgery and a second round of radiation, doesn’t want to be defined by the disease. He runs most days, “although it takes a year sometimes to come back from the surgery.” He kayaks and mountain bikes. He and his wife, Pearl, have two adult children.
He knows he looks different. “But I forget that when I’m in a new place.” He loves children, and how wonderfully frank they are. When they ask, “hey, what happened to your head?” he sometimes tells them he was attacked by a wolf, although they never believe him. “There’s truth in it. It is a bit like being attacked by a wolf. Cancer is like that,” he said.
For a time, he talked about cancer as his “unwelcome blessing.” He didn’t want it. “I wasn’t grateful for it,” he said. “But there were, there are, blessings nonetheless,” he said, like deepened relationships and appreciation for “the miracle of life.”
For Giuliano, the most challenging part about cancer, and his decision to be so public about it (he wrote a regular online blog for UC Observer, “Camino de Cancer,” after the famed Camino de Santiago, detailing his pilgrimage with cancer in candid detail) is that some people see him as someone with cancer. “I always get these looks, deep in my eyes — ‘how are you doing?’
“It’s the people who get kind of stuck there, and I find that difficult.” Their compassion is genuine. “But I’m not there anymore, and I guess that’s part of the chronic thing. People who have had cancer for a long time, I’m sure they don’t want to live as if their identity is, ‘I’m a cancer person.’”