To Treat Or Not To Treat?

That is the ques­tion more and more women di­ag­nosed with can­cer are be­ing forced to an­swer. As science be­comes more adept at de­tect­ing the dis­ease, it can spot tiny tu­mours that would prob­a­bly never be deadly – mak­ing ag­gres­sive ther­a­pies (along with their

Women's Health (South Africa) - - NEWS - BY L AURA BEIL

Some women are choos­ing not to treat can­cer. Here’s why...

“Early de­tec­tion saves lives.” This mantra – the crux of count­less pub­lic ser­vice an­nounce­ments and aware­ness cam­paigns – is as en­cour­ag­ing as it is em­pow­er­ing. Plus, un­der­diag­no­sis re­mains a prob­lem in SA, where can­cers are of­ten caught too late. But at the op­po­site end of the spec­trum, an­other is­sue is on the rise: that of over­diag­no­sis. As tech­nol­ogy ad­vances, science can now zoom in on minis­cule flaws that make can­cer de­tec­tion a murkier mat­ter. Take mam­mog­ra­phy. If five women over the age of 40 were to get mam­mo­grams, one of them would be saved from dy­ing of breast can­cer. But an­other three could be called back for ad­di­tional test­ing for a “false pos­i­tive”, some­thing that looks like can­cer, but turns out to be harm­less: a cyst or cal­cium de­posit, be­nign tu­mour or dense tis­sue. This phe­nom­e­non is be­ing called over­diag­no­sis and, in re­cent years, it has mor­phed into a light­ning rod due to the col­lat­eral dam­age it can cause: pa­tients are ex­posed to the cost, emo­tional tur­moil and side ef­fects – some of them life-threat­en­ing them­selves – of un­nec­es­sary surgery, chemo­ther­apy and ra­di­a­tion.

Over­diag­no­sis isn’t lim­ited to breast can­cer. A study of 12 high-in­come coun­tries found that thy­roid can­cer has be­come the most com­monly di­ag­nosed can­cer in women, yet stud­ies sug­gest most of this in­crease is due to very small, non-threat­en­ing tu­mours. The same goes for the vast ma­jor­ity of ab­nor­mal skin growths. Mean­ing: the tools to find mi­cro­scopic ab­nor­mal­i­ties are now, in some cases, more pow­er­ful than the tools to un­der­stand them. “Say you have a tu­mour the size of a pea. This pea-sized le­sion may not be ge­net­i­cally pro­grammed to grow, spread and kill. It may be ge­net­i­cally pro­grammed to stay pea-sized for the next 40 or 50 years,” says on­col­o­gist Dr Otis Braw­ley, a global leader in the field of can­cer prevention and con­trol. Prob­lem is, doc­tors don’t yet have a way to dis­tin­guish the non-grow­ing tu­mour from the one that some­day will pose a threat. As a re­sult, al­most ev­ery­thing is treated ag­gres­sively. Re­searchers be­lieve over­diag­no­sis – and sub­se­quent overtreat­ment – might cause some women to lose trust in, and aban­don, fu­ture screen­ing al­to­gether. What’s more, when typ­i­cally slow-grow­ing and rarely lethal can­cers (as op­posed to high­mor­tal­ity can­cers like pan­cre­atic and ovar­ian) are found, some ex­perts now sug­gest a prac­tice called ac­tive sur­veil­lance – mon­i­tor­ing a tu­mour and act­ing only if it stirs. So far, it’s been a tough sell for both pa­tients and doc­tors. Af­ter all, it’s hard to get your brain around the idea of hav­ing fewer screen­ings or of re­ceiv­ing a can­cer di­ag­no­sis and then wait­ing to see what hap­pens. But as these three women’s sto­ries il­lus­trate, some­times you can do just that.

JAN: “Take it out.”

Eight years ago, Jan Vick Harris’ doc­tor no­ti­fied the then 55-yearold that her an­nual mam­mo­gram had un­cov­ered an ab­nor­mal­ity. A biopsy con­firmed she had DCIS, duc­tal car­ci­noma in situ, also known as stage 0 can­cer, in the milk ducts of her right breast. Her breast sur­geon rec­om­mended ag­gres­sive treat­ment to make sure it hadn’t spread: 10 rounds of ra­di­a­tion, twice a day for five straight days, fol­lowed by surgery. Pet­ri­fied and in shock, Jan con­sented. She was wor­ried about the side ef­fects of ra­di­a­tion – in­clud­ing pain and a break­down of healthy breast tis­sue – but went ahead any­way. The idea that there was a tick­ing time bomb in her breast was un­bear­able, es­pe­cially since she’d lost her fa­ther to lung can­cer. When she later con­sulted with an on­col­o­gist to make sure all was well, he told her that what she had was not ac­tu­ally con­sid­ered can­cer – de­spite the name – and that it rarely morphs into the dis­ease, even without treat­ment (ac­cord­ing to a re­cent study, only about three per­cent of cases be­come deadly). Jan was flab­ber­gasted. If she’d had this in­for­ma­tion up front, she says, she might have opted for a more con­ser­va­tive ap­proach, like more fre­quent mam­mo­grams to mon­i­tor any growth. DCIS, which rep­re­sents about 11 per­cent of all breast can­cers found through screen­ing, throws women each year into the same quag­mire. The words can­cer and car­ci­noma evoke an al­most pri­mal fear. In situ is Latin for “in place” – as in, not likely to in­vade sur­round­ing tis­sue – but most of us don’t read Latin and most doc­tors don’t ex­plain what the term means. “Pa­tients gen­er­ally want to cut can­cer out. They want to treat it ag­gres­sively,” says Braw­ley. And doc­tors may be mo­ti­vated to rec­om­mend im­me­di­ate treat­ment for fear of be­ing sued later on the off chance some­thing does spread or get worse. A re­cent study found that be­tween 2007 and 2011, even in the face of the three-per­cent mor­tal­ity statis­tic, 88 per­cent of women di­ag­nosed with DCIS were treated with surgery, such as lumpec­tomy or mas­tec­tomy. This has led some ex­perts to ar­gue that for DCIS, the Big C la­bel should be re­placed with a less scary word. Re­search from the Univer­sity of Cal­i­for­nia at San Fran­cisco sug­gests this move could have pro­found ef­fects on women’s treat­ment de­ci­sions. In the study, healthy women were asked to imag­ine that they were di­ag­nosed with DCIS. When the con­di­tion was de­scribed as “non-in­va­sive breast can­cer,” roughly half of the women said they’d want surgery; when it was char­ac­terised as a “breast le­sion” or “ab­nor­mal cells,” only about a third said they would opt to treat sur­gi­cally.

SARAH: “I don’t want surgery.”

When Sarah*, 47, learned of her thy­roid tu­mour, she had just com­pleted treat­ment for lym­phoma, a can­cer of the im­mune cells. Dur­ing a fol­low-up PET scan, her thy­roid lit up: she had a mi­nus­cule tu­mour. Fa­mil­iar with the un­pleas­ant side ef­fects of chemo (in­clud­ing a slight chance of de­vel­op­ing other can­cers from zap­ping nearby healthy cells) and ra­di­a­tion – and be­cause her own re­search told her most thy­roid can­cers are slow grow­ing – she didn’t want to leap into treat­ment. But the first two doc­tors she saw

wanted to re­move her thy­roid im­me­di­ately. Af­ter weeks of search­ing, she fi­nally found a physi­cian com­fort­able with ac­tive sur­veil­lance – in this case, keep­ing an eye on her tu­mour with an ul­tra­sound ev­ery six months. When Sarah shared her story on so­cial media, pre­sent­ing her choice as an op­tion for other thy­roid pa­tients, she ex­pe­ri­enced a flood of back­lash. “I was ac­tu­ally floored. I thought peo­ple would take my in­for­ma­tion for what it was: ‘Great! There’s an­other al­ter­na­tive,’” she says. In­stead, peo­ple called her “crazy” for not hav­ing surgery. More than 64 000 peo­ple were di­ag­nosed with thy­roid can­cer in 2015; that’s dou­ble the rate in 2002. But still, the num­ber of peo­ple dy­ing from the con­di­tion has re­mained rel­a­tively flat. Which begs the ques­tion: has the can­cer it­self soared or just the dis­cov­ery of it? Some ex­perts, in­clud­ing Dr Juan Brito, an en­docri­nol­o­gist at the Mayo Clinic, feel it’s the lat­ter. Nearly all of the in­crease in thy­roid can­cer rates is due to the de­tec­tion of slug­gish growths less than two cen­time­tres in di­am­e­ter, called pap­il­lary thy­roid tu­mours. The nod­ules are usu­ally dis­cov­ered dur­ing an external exam at a rou­tine doc­tor’s ap­point­ment. Re­cent ad­vances in ul­tra­sound and biopsy, which are used to con­firm the di­ag­no­sis, have al­lowed doc­tors to de­tect tu­mours so small that they pre­vi­ously wouldn’t have been dis­cov­ered. In Brito’s mind, scores of women with these tu­mours are get­ting un­nec­es­sary treat­ment. And while surgery is ex­tremely ef­fec­tive (a 99.9 per­cent 20-year sur­vival rate), it can, in about two per­cent of cases, dam­age the vo­cal cords and lead to low cal­cium lev­els (which can cause mus­cle spasms and numb­ness). Women who have their thy­roid glands re­moved must also take a hor­monere­place­ment pill – which can lead to an ir­reg­u­lar heart­beat and os­teo­poro­sis – ev­ery day for the rest of their lives.

LAURA: “I changed my mind.”

You may be think­ing, “Okay, there’s a 99 per­cent chance my can­cer will never amount to any­thing, but what if I’m that 100th woman?” Un­til sci­en­tists can defini­tively sort the harm­less tu­mours from the deadly ones, the de­ci­sion of what to do comes down to one ques­tion: is it eas­ier to wake up ev­ery morn­ing know­ing you have can­cer in your body, but safe from the con­se­quences of po­ten­tially point­less treat­ment – or to take the risk of treat­ment, free­ing your­self from the nag­ging feel­ing that there’s “some­thing in­side you” that could one day end your life? “In most cases, there is not an ab­so­lute right an­swer,” says psy­chol­o­gist Dr Michael Ste­fanek. And the an­swer could even change dur­ing the course of your dis­ease. Three years ago, when Laura* was 25, a Pap smear found cer­vi­cal dys­pla­sia, ab­nor­mal tis­sue that could morph into can­cer – or not. “The ma­jor­ity of dys­plasias caused by HPV will, if watched over time, dis­ap­pear on their own,” says Braw­ley. “But there are some peo­ple who are un­com­fort­able with watch­ing and wait­ing and they in­sist on treat­ment.” Com­monly, that in­volves elec­tri­cally burn­ing off the dys­pla­sia (the pro­ce­dure can of­ten be done without anaes­the­sia and has a 99 per­cent cure rate), which, in rare cases, can leave the cervix weak­ened and some­times un­able to bear the weight of a foe­tus. “We can cause cer­vi­cal in­com­pe­tence, which raises the risk for mis­car­riage, by treat­ing too many of these le­sions,” says Braw­ley. Laura’s doc­tor made this clear at her di­ag­no­sis three years ago. She was en­gaged and wanted a fam­ily. “Hav­ing kids has al­ways been very im­por­tant to me,” she says. “I was wor­ried that if I got treat­ment too soon, I could put my­self and my chil­dren at risk for early birth, but if I waited too long and ended up with cer­vi­cal can­cer that would put the whole kids thing out the win­dow.” Af­ter scour­ing the In­ter­net and dis­cussing her di­ag­no­sis with her mother, a nurse, she de­cided that, in­stead of treat­ing the dys­pla­sia, she would mon­i­tor it with fre­quent biop­sies. Her doc­tor sup­ported this. Six months later, when the biopsy showed the dys­pla­sia had wors­ened; she re­versed her de­ci­sion and had the pro­ce­dure. She hasn’t yet tried to get preg­nant. Still, she is com­fort­able with her choice be­cause at ev­ery step, she was able to weigh all the con­se­quences be­fore de­cid­ing.

YOU: “I’ll make an in­formed choice.”

Laura’s sce­nario, doc­tors say, is what early de­tec­tion in 2017 should look like: em­pow­er­ing women with the pros and cons and al­low­ing them to chart their own path. Early de­tec­tion (see The Big Screens) is still im­por­tant since you need in­for­ma­tion in or­der to make an in­formed de­ci­sion. The ear­lier an ab­nor­mal­ity is caught, the more op­tions you have. If screen­ing does re­veal the be­gin­nings of can­cer, vari­ables like age and fam­ily his­tory can in­form how ag­gres­sively to treat. Ul­ti­mately, you need to talk to your doc­tor about all the fac­tors that af­fect your par­tic­u­lar case in or­der to make a de­ci­sion. You may also want to get a sec­ond opinion (most docs ac­tu­ally wel­come them) or speak with other di­ag­nosed women (sup­port groups like Reach For Re­cov­ery or CANSA re­sources can help). Talk­ing about why they chose to treat or not and how they feel about that de­ci­sion today can pro­vide unique in­sights. “Some pa­tients will feel com­fort­able watch­ing and wait­ing be­cause they un­der­stand that this is un­likely to be a prob­lem,” says Brito. “That’s per­fect for them.” And there are other pa­tients who, even armed with all the in­for­ma­tion, still don’t feel se­cure car­ry­ing a tu­mour. “And that,” he says, “is also per­fect.”

SOME­TIMES IT CAN BE A WAIT­ING GAME.

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