For Can­cer Pa­tients, A Strug­gle to Pro­long Hope as Well as Life

The Washington Post Sunday - - Style - By David Brown

Why is it that Amer­i­cans speak of try­ing to whip can­cer, show courage in the face of it, and die af­ter a long bat­tle against it? Why at the same time do we tell our­selves can­cer is the new di­a­betes, a chronic dis­ease we can have for a life­time?

It’s be­cause what F. Scott Fitzger­ald said about the rich — “They are dif­fer­ent from you and me”— is true of can­cer among the mul­ti­tude of bod­ily af­flic­tions. We think it’s dif­fer­ent, too.

We take can­cer per­son­ally. We talk about it in terms we would never use for heart dis­ease, which ac­tu­ally kills more peo­ple, or stroke, the third most com­mon cause of Amer­i­can death. We im­pute to it some­thing like evil in­tent, and to some ex­tent we make our re­sponse to it a mea­sure of hu­man char­ac­ter.

Can­cer is the phys­i­o­log­i­cal equiv­a­lent of war — hand-to-hand com­bat, specif­i­cally. Can­cer talk of­ten in­vokes a sol­dier’s virtues, not only phys­i­cal strength but a “fight­ing spirit.”

But as in com­bat, there’s a fair amount of wish­ful think­ing and in­ten­tional dis­re­gard of cal­cu­la­ble risk. There aren’t many statis­ti­cians in fox­holes. There is a curious lack of them in can­cer clin­ics, too. Truth may not be the first ca­su­alty in the war on can­cer, but it sus­tains a fair amount of col­lat­eral dam­age.

All of this was on dis­play in the past two weeks as El­iz­a­beth Ed­wards, wife of pres­i­den­tial can­di­date John Ed­wards, and Tony Snow, the White House press sec-

re­tary, an­nounced their can­cers — hers breast, his colon — had reap­peared.

At the daily brief­ing where she de­scribed Snow’s news to re­porters, White House spokes­woman Dana Perino said that “if you know Tony, then you know that he’s a fighter. . . . He told me that he beat this thing be­fore and he in­tends to beat it again.” In a sep­a­rate state­ment, Pres­i­dent Bush said his press sec­re­tary “is not go­ing to let this whip him.”

At the news con­fer­ence El­iz­a­beth Ed­wards and her hus­band held, the em­pha­sis was more on op­ti­mism, less on pugilism.

John Ed­wards spoke of the need to “keep your head up, keep mov­ing, be strong.” He likened her metastatic can­cer to di­a­betes, a chronic dis­ease in which “you take your medicine.” El­iz­a­beth Ed­wards said she does “not ex­pect my life to be sig­nif­i­cantly dif­fer­ent” for the fore­see­able fu­ture.

It’s un­der­stand­able where th­ese ap­proaches to bad can­cer news come from.

In many ways, the fight­ing metaphors make sense. Treat­ing can­cer is more like a mil­i­tary cam­paign than treat­ing con­ges­tive heart fail­ure. Can­cer be­gins at a dis­tinct place in the body’s ge­og­ra­phy, but can spread to and over­run dis­tant ter­ri­tory, of­ten by sur­prise. Ther­apy in­volves de­stroy­ing or re­cap­tur­ing oc­cu­pied ter­ri­tory, or vis­i­bly weak­en­ing the in­vader.

The op­ti­mism, on the other hand, flows from the re­silience and hope­ful­ness of both pa­tients and the doc­tors treat­ing them. Th­ese are nat­u­ral re­ac­tions to ad­ver­sity. But like the dis­ease it­self, can­cer op­ti­mism is dif­fer­ent from or­di­nary op­ti­mism.

El­iz­a­beth Ed­wards and Tony Snow to­day have life ex­pectan­cies sub­stan­tially less than five years — if their ill­nesses fol­low a course sim­i­lar to that of most pa­tients in their cir­cum­stance.

“Most,” though, isn’t what on­col­o­gists like to fo­cus on — at least when most pa­tients in th­ese sit­u­a­tions don’t live very long. In­stead, they em­pha­size the best pos­si­ble out­come, even when it’s an un­likely one.

In sta­tis­ti­cal terms, they di­rect at­ten­tion to the thin, right-hand “tail” of the bell-shaped curve plot­ting sur­vival. That’s the part of the curve rep­re­sent­ing the few peo­ple who live a decade or more. Rel­a­tively speak­ing, doc­tors don’t spend a lot of time talk­ing about the bulging mid­dle of the curve, which rep­re­sents the usual out­come.

This isn’t true for a lot of dis­cus­sions in medicine. When a physi­cian pre­scribes a new drug or seeks a pa­tient’s con­sent for surgery, most of the con­ver­sa­tion is about what hap­pens to most peo­ple — not the rare com­pli­ca­tions. It’s the fat part, not the tails, of the bell curve doc­tors want to talk about — and pa­tients want to hear about.

In fact, it’s very hard for peo­ple to get es­ti­mates of sur­vival when a fully treated can­cer re­turns, as it has with Ed­wards and Snow. The data aren’t on the Na­tional Can­cer In­sti­tute’s Web site, and they aren’t on the Amer­i­can Can­cer So­ci­ety’s. Even the ex­perts in the field aren’t wild about break­ing the news.

Longevity af­ter a re­cur­rence of colon can­cer — Snow’s sit­u­a­tion — is a mov­ing tar­get, says Robert J. Mayer, pro­fes­sor of medicine at Har­vard Med­i­cal School. It im­proves al- most ev­ery year as new drugs ar­rive and new com­bi­na­tions are tried.

“I would tell some­body like him that we don’t know for cer­tain any­more ex­actly what the du­ra­tion of sur­vival will be, but that it is bet­ter than it was be­fore and that we ought to move ahead,” he says.

Asked about Ed­wards’s likely prospects, Barry R. Meisen­berg, a pro­fes­sor of medicine who is af­fil­i­ated with the Greenebaum Can­cer Cen­ter at the Univer­sity of Mary­land Med­i­cal Cen­ter, re­marks, “We try not to fo­cus too much on the sta­tis­tics.” He ex­plains that “within ‘av­er­age sur­vival’ are peo­ple who do much, much bet­ter than av­er­age and peo­ple who do much, much worse than av­er­age. Since there is no such thing as an ‘av­er­age per­son,’ sta­tis­tics are not very help­ful.”

How (or whether) doc­tors tell pa­tients they have in­cur­able dis­eases and are likely to die in a few months or years — and how well pa­tients un­der­stand the in­for­ma­tion and use it to make de­ci­sions — are sub­jects re­searchers have only started to look at in the last decade or so. One of them is Thomas J. Smith, a pro­fes­sor of medicine and on­col­o­gist at Vir­ginia Com­mon­wealth Univer­sity. He es­ti­mates that half of can­cer pa­tients never get a full and frank dis­cus­sion of their chances, and that about 15 per­cent don’t want one.

“It is re­ally hard to give good prog­nos­tic in­for­ma­tion. It is re­ally hard to get it,” he says.

One of the rea­sons is that doc­tors fear an un­var­nished ac­count of the sur­vival odds may rob the pa­tient of hope. How­ever, stud­ies re­veal that most pa­tients want to know their chances (even if they go on to re­vise them up­ward in their minds). In­ter­est­ingly, some re­search has shown that a poor prog­no­sis has lit­tle ef­fect on a pa­tient’s ca­pac­ity for hope. Hope, as lot­tery play­ers know, doesn’t de­pend on sta­tis­tics.

Given all this, it’s not sur­pris­ing a lot of un­rea­son­able ex­pec­ta­tions are float­ing around.

Re­search shows that doc­tors con­sis­tently over­es­ti­mate the length of time their ter­mi­nal can­cer pa­tients will sur­vive — but not as much as the pa­tients do. A 1998 study of 900 peo­ple with ad­vanced can­cer found that 82 per­cent had more op­ti­mistic es­ti­mates of their sur­vival chances than their doc­tors.

Pa­tients and physi­cians also tend to play down risky treat­ments. A 2001 study asked 71 pa­tients await­ing stem-cell trans­plants about their chances of dy­ing from the treat­ment. On av­er­age they guessed 21 per­cent. Their doc­tors said 33 per­cent. Ac­tual mor­tal­ity was 42 per­cent.

And then there’s the press agen­try.

In re­cent years, news of biotech­born “tar­geted” drugs — an­ti­bod­ies, growth in­hibitors, and other bi­o­log­i­cal mol­e­cules — has given the pub­lic the im­pres­sion we’re in a new era of can­cer ther­apy. It’s true, we are. Un­for­tu­nately, it’s still largely gov­erned by the old era’s out­comes.

One of the best of th­ese sub­stances, Her­ceptin, is use­ful in about one-quar­ter of breast can­cers. A study pub­lished in Jan­uary showed that when added to stan­dard chemo­ther­apy, it cuts by one-third a wo­man’s risk of dy­ing in the two years af­ter her tu­mor is di­ag­nosed. It may ul­ti­mately boost long-term sur­vival; that isn’t known. Oth­ers are less im­pres­sive. Avastin, which blocks blood ves­sel growth and was once touted as po­ten­tially a gen­eral “cure for can­cer,” slows the pro­gres­sion of ad­vanced colon can­cer for four months, and ex­tends life by five months. “Th­ese im­prove­ments are clin­i­cally mean­ing­ful,” re­searchers wrote plead­ingly in the New Eng­land Jour­nal of Medicine in 2004.

Four months may be a gift (es­pe­cially to those with young chil­dren, like Ed­wards and Snow). But such ad­vances are hardly turn­ing can­cer into a chronic dis­ease like di­a­betes, the ail­ment John Ed­wards com­pared to his wife’s can­cer. Most peo­ple with di­a­betes live for decades.

But if that anal­ogy was in­apt, Ed­wards’s dec­la­ra­tion that his wife’s can­cer won’t be cured showed he un­der­stands the cen­tral fact about her dis­ease now.

“A sur­pris­ingly high pro­por­tion of pa­tients with metastatic solid tu­mors don’t re­al­ize that there is no chance for cure,” says Jane C. Weeks, an on­col­o­gist at Dana-Far­ber Can­cer Cen­ter in Bos­ton. “I’ve won­dered how many pa­tients in ex­actly that sit­u­a­tion have been shocked to learn oth­er­wise from the cov­er­age about El­iz­a­beth Ed­wards.”

There’s a crash course on can­cer un­der­way. For bet­ter or worse, we’re go­ing to see how it touches a num­ber of pub­lic lives.

“So they are not in this alone,” Weeks says. “They are in it with all of us.”

BY CHRIS HONDROS — GETTY IMAGES

De­spite more ef­fec­tive meth­ods of treat­ing can­cer, the end re­sults re­main largely the same.

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