FAC­ING A NEW FU­TURE

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, rather than eradi

Windsor Star - - CANADA -

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. Der ma to fib ros ar com a pro tu­ber ans, a rare type of sar­coma that spreads with ten­ta­cle-like arms be­neath the skin. The ear­lier pathol­ogy slides had been mis­read.

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 doc­tor­as­sisted 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-fit­sall 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 — “boxin tu­mour cells with a dis­crete­fo­cused 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-oflife-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 in­be­tween,” 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.’”

WHO WANTS TO GO TO WAR WITH THEM­SELVES? 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? — ON­COL­O­GIST ED­WARD HALPERIN

DOUG GIB­BONS PHO­TOG­RA­PHY

Church min­is­ter David Gi­u­liano has lived with a rare form of cancer for 20 years.

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