cancer education & knowledge through people & facts · 2017-07-27 · education &...

Education & knowledge through people & factsNumber 15, November-December 2006

➜ Lynn Faulds Wood: tell it like it is ➜ The write stuff: helping health journalistsdo a better job ➜Breast cancer stamp raises $50 million... and some sticky questions➜ Minimum volumes: are vested interests taking precedence over patient care?

Lynn Faulds Wood

CancerWorld 15

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Contents

CANCER WORLD ■ NOVEMBER-DECEMBER 2006 ■ 1

3 EditorialThe write stuff

4 Cover StoryLynn Faulds Wood: tell it like it is

14 Grand RoundTurn up the volume

24 MasterpieceSpread the word

32 Spotlight on...Record-breaking stamp raises sticky questionsHelping the media to get the message

40 Best ReporterReporting cancer from the insideThe subject is complex, the story is clear

50 Impact FactorDoes chemotherapy given directly to the liver improve survival in patientswith hepatic metastasis?Should patients with ovarian cancer receive intraperitoneal chemotherapyfollowing initial cytoreductive surgery?Newsround

60 FocusWhat’s brave about having cancer?

EditorKathy [email protected]

Assistant EditorAnna Wagstaff

Editorial AssistantMariarita Cassese

Editorial BoardMariano Barbacid, Franco CavalliAlberto Costa (chair)Lev Demidov, Mario DicatoGordon McVie, Nicolas PavlidisHans-Jörg Senn, Antonella Surbone

Board of AdvisorsJan Betka, Jacques BernierVincent T. DeVita, Lex EggermontJan Foubert, Lynn Faulds WoodNeel Mittra, Santiago PavlovskyBob Pinedo, Mike RichardsMaurice Schneider, Tom VouteUmberto Veronesi (chair)

Contributing WritersMarc Beishon, Riazat Butt,Simon Crompton, Catherine Kalamis,David Kerr, Emma Mason,Peter McIntyre, Carolyn Runowicz,Anna Wagstaff

Publishing AdvisorsGillian Griffith, Fedele Gubitosi

Website LiaisonChatrina Melcher

Project DesignerAndrea Mattone

Graphic and Layout DesignersPier Paolo Puxeddu+Francesca Vitale

Production ManagerGianfranco Bangone

Published byEditoriale Darwin srlPiazza Antonio Mancini, 4 - 00196 Rome

Printed byMiligraf snc - Roma

Cover photographEligio Paoni / Contrasto

Registrazione Tribunale di Roma Decreto n. 436 del 8.11.2004

Direttore responsabileEmanuele Bevilacqua

All enquiries about Cancer Worldshould be made to:ESO Editorial OfficeVia del Bollo 420123 Milan, Italye-mail: [email protected]: +39 02 8546 4545

All correspondence should be sentto the Editor at [email protected]

Copyright ©2006 European School of Oncology.All rights reserved

Cancer World is published six times per year by the European School of Oncologywith an average print run of 10,000 copies. It is distributed at major conferences,mailed to subscribers and to European opinion leaders, and is available on-line atwww.cancerworld.org

Editorial


Cancer has a pretty poorpublic image. Myths andmisconceptions fuel neg-ative attitudes and igno-rance about the disease.The media, in turn, can

either fuel these misconceptions, or itcan challenge them.Good journalism helps people understandthat cancer affects everyone, and that theexperience of cancer patients and theirchances of surviving with a good qualityof life depend heavily on cancer servicesgetting it right, from early detection torehabilitation and long-term support.Bad journalism portrays cancer as a virtu-al death sentence on the one hand, whilespreading the false hope of ‘wonderdrugs’ on the other. Talk of ‘brave’ or‘tragic heroes’ denies readers an under-standing of the reality of living with acancer diagnosis while failing to askpressing questions about what is neededto improve the experience of patients andtheir families. As a result the generalpublic remains ignorant about cancer,negative attitudes are reinforced andhealth services are let off the hook. This issue of CancerWorld showcasesexamples of where journalists and themedia have made a positive difference.The stories demonstrate how effective

➜ Kathy Redmond ■ EDITOR

the media can be in challenging the pub-lic’s sense of powerlessness in the faceof cancer, by raising awareness abouthow we can bridge gaps and addressinequities in access to care, and by con-veying important messages: that the qual-ity of cancer care can vary widely, thatearly diagnosis saves lives, and that lifedoes not stop because you have cancer. Cancer can be a challenging topic tocover well. Journalists often face prob-lems in accessing clear, up-to-date, accu-rate information, finding credible sourcesand resisting the pressure to sensation-alise stories to make better headlines. Wecan help them do a better job by provid-ing the information they need and clarify-ing the science behind the story. Weshould acknowledge journalists whenthey are doing a good job. The EuropeanSchool of Oncology’s Best ReporterAward provides one example of how thiscan be done. It is probably impossible to get rid of sen-sationalist media reporting of cancer alto-gether. However, we should not sit backand accept poor journalism as inevitable.We need to work with the media, to pro-mote critical and intelligent coverage thatwill improve the public’s understandingof what cancer is and what can be doneabout it.

The writestuff

All correspondence should be sent to the Editor at [email protected]

CoverStory

Lynn Faulds Wood: tell it like it is

Doctors don’t know best if they haven’t been trained. Embarrassment isn’t the reason why colon

cancer is picked up late. People will watch TV programmes that talk sense about cancer.

Journalist and cancer survivor Lynn Faulds Wood knows how to get to the bottom of a problem

and tell the world what she has found. Luckily for Europe’s cancer patients, she’s unstoppable.

IFthere was one person who waslikely to make a big impact onthe cancer patient advocacymovement it would be LynnFaulds Wood, a consumer

affairs journalist and TV presenter known as‘Action Woman’ from her earlier years as a maga-zine writer. Now president of the EuropeanCancer Patient Coalition (ECPC), and head ofher own charity – Lynn’s Bowel CancerCampaign – Faulds Wood has built up a formi-dable presence among the movers and shakers inthe cancer world since she suffered herself fromcolon cancer in the 1990s.

From getting royalty – Prince Charles in thiscase – to say ‘bottoms and bowels’ on prime-timetelevision, to lobbying the highest authorities inEurope on re-instituting a concerted attack on can-cer, Faulds Wood is helping to marshal a patientmovement that won’t be ignored by the politiciansand medical community. “Our slogan is ‘nothingabout us without us’,” she says of her work with theECPC. “Our aim is to get cancer back on theEuropean agenda after the health budget cuts.”

➜ Marc Beishon

4 ■ CANCER WORLD ■ NOVEMBER-DECEMBER 2006

The ECPC is among several health bodies thathave been highly critical of the EuropeanCommission’s latest public health programme,which they say has a ‘drastically’ reduced budgetand has removed a commitment to reduce theincidence of major diseases, including cancer.Faulds Wood and colleagues are concerned thatexisting work such as the European CancerNetwork’s quality assurance guidelines for can-cer screening could be affected, while strategicobjectives, such as helping countries upgradetheir cancer registries and put in place cancerplans, could fall by the wayside.

While the European plan does aim to tacklehealth determinants such as smoking, FauldsWood adds: “We think they are missing a hugetrick. You won’t change people’s behaviourunless you touch their hearts, and cancer is thebiggest single reason for touching their hearts onthese subjects. We will be much more effectiveif we put cancer back on the agenda and do itproperly.”

Winning over hearts – and then the mindsof decision makers – has underpinned much of

CoverStory

CANCER WORLD ■ NOVEMBER–DECEMBER 2006 ■ 5

her work in general consumer affairs and nowhealth. She has a journalist’s instinct to gatherthe evidence before ‘going public’, and has beenhighly effective in helping to remove the barriersto higher-quality care during the journey thatcancer patients make, often putting medics onthe spot in public arenas.

Faulds Wood started out a French teacher –French and Spanish were her subjects at uni-versity. “Being a teacher was great because Iconsider education is what I’ve really donethroughout my career,” she says. She then movedto a career in journalism, starting on a woman’s

magazine as Action Woman, after she had hadher own consumer experience trying to returnsome clothing her husband had bought her.

Headhunted by national newspapers, shetook her consumer writing to the Daily Mail andthen to the mass-circulation Sun, figuring thatupmarket newspaper readers “could look afterthemselves”. It’s a point she continues to maketoday, holding up the Sun to senior medical pro-fessionals and saying, “This is the audience youneed to reach.” She adds that she also spent ayear teaching English to foreign businesspeople,and this – and the experience on the Sun –

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She is helping to marshal a patient movement that

won’t be ignored by politicians or the medical world

CoverStory


drummed into her the need for simple, directcommunications.

There is tremendous power in engagingnewspapers such as the Sun, as she was todemonstrate in a campaign to close down atawdry pet animal market in London’s East End,which culminated in a march on MargaretThatcher in Downing Street. Market forces dulygave way to public pressure.

Faulds Wood then moved to television,working on the new breakfast shows and also asa presenter of Watchdog, a consumer affairsshow in which she became a household name. “Ialways tried to take on at least one big healthstory each year,” she says. They included rubellavaccinations – “The government said you wereprotected for life and we proved you weren’t” –and toxoplasmosis, which is caused by a parasitein undercooked meat that can harm unbornbabies, but which can be detected with a simpleblood test.

She also made a series filming the best doc-tors around Europe. “In one hospital in France Isaw a crowd of doctors from various countriesobserving a procedure, and I asked how manyhad come from Britain. There were none. Ithought this might be down to arrogance, but in

fact British doctors had so little funding theycouldn’t afford to travel. But we have also tend-ed to be too insular in the UK.”

Then in 1991, at the age of 40, her world fellin. From being a top TV presenter, and with newfamily life – she had a son of two – she was diag-nosed after a long delay with advanced coloncancer. “I don’t blame my doctors for not pickingup the symptoms – it was fairly subtle rectalbleeding. I was told it was probably piles. I nowknow that a lot of us who are told we have pilesactually have anal cushion bleeding, which isalso pretty common. But after five months, I didask to see the top GP at my doctors’ practice,saying if it was piles they should be seen to. Ifinally got to see someone who examined mewith a rigid proctoscope, which wasn’t longenough to reach the cancer, and then I was sentfor a barium enema.”

All in all, it took nearly a year before FauldsWood was diagnosed with cancer. “It was a classicapple-core-shaped colon cancer. I was shattered.I’d apparently had it for years, and I didn’t knowwhat my chances were. There was no Internetthen. I remember going round the bookshopslooking for information, but there was nothingon bowel cancer.” It was not until a year after

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treatment that she looked into data on survival,discovering that, for her stage III cancer, only 34%of people then lived beyond five years in the UK.

Meanwhile she was offered swift surgicalremoval of the cancer at St Mark’s, London,being fortunate enough to be able to pay for pri-vate treatment (and trying to avoid the attentionof the media). There was an option to havechemotherapy, but her surgeon decided to holdback and use it only if there was recurrence – apossibility as the cancer had started to invadeher lymph nodes. “He made the decision. Therewas no discussion about it,” she says.

Subsequent tests revealed no spread toother organs, and five years later Faulds Woodreceived the all clear. She was left with a largeoperation scar from 50 staples running like atrain-track down her front, and the immensepsychological trauma of having to deal with can-cer (she has since had skin cancer too). Shethrew herself back into TV work very quickly,but the media had found out and she received alot of coverage. “I thought if I keep quiet aboutit, others may die,” she says. “People thought itwas an ‘old man’s’ disease, but once I startedtalking about it I kept finding people who’d hadit and never told anyone. I was about the onlywell-known person who would.”

As she gathered her thoughts about bowelcancer, she started to find out more about thehuge disparities in treatment then existing inBritain. “Looking back it was like the Dark Ages,the quality of colonoscopy was often poor andsome of the surgery shameful. While we hadsome of the best surgeons, such as Bill Heald atBasingstoke, we also had some of the worst, andthe poorer ones didn’t seem to know it. Theystayed in the same hospitals for a long time anddidn’t know the rest of the world had moved on.The EuroCare data in 1999 finally showedwe were among the worst in Europe for canceroutcomes.”

With her own experience out in the open,Faulds Wood inevitably turned her campaigninginstinct to the medical world and to cancer. Shefronted a TV programme called Doctor KnowsBest. “It was about the role of the GP [generalpractitioner] as gatekeeper, and that they didn’thave a good enough chance of spotting cancersbecause they weren’t adequately trained to doso. Our system has not been the best. In France,for example, you can go straight to a specialistcentre, and not through a gatekeeper who canstop you getting there.”

This programme was offered to the BBC,which turned it down, saying no one wanted tosee cancer discussed during prime-time viewing.Faulds Wood took it to a strong investigative pro-gramme, World in Action, run by one of Britain’scommercial networks, and it got its highest audi-ence – some 10.5 million – and prompted thegovernment’s Chief Medical Officer to callFaulds Wood and promise action.

Then after making several other pro-grammes under the title Lady Killers, ondiseases such as cervical cancer affectingwomen, Faulds Wood got the ‘all clear’ abouther own cancer and felt able to address bowelcancer head on. “In 1996 I made a programmecalled Bobby Moore and Me, which went out onthe 30th anniversary of England winning theWorld Cup.” Bobby Moore was England’sfootball captain for the country’s greatest eversporting triumph, but had died of bowel cancerin 1993 at the age of 51.

“Stephanie Moore, Bobby’s wife, gave herfirst interview, saying she’d been waiting to talkabout it. She’d known that it was an unnecessarydeath. Bobby had four years of symptoms andwas told it was irritable bowel syndrome. In theprogramme I went through each stage in thecancer journey and showed what was wrong inthe UK, and it got 6.5 million viewers – aremarkable figure given it was in July, usually a

The BBC turned it down, saying no one wanted

to see cancer discussed during prime-time viewing

CoverStory


“But this is still unsatisfactory. Half of us are stillpresenting with symptoms when the cancer isadvanced. And it is hard for GPs to unlearn whatthey think they have known for many years. Weneed something more to help them when theyare unsure about making a referral, and we aredeveloping a software tool to this end. But ofcourse screening is the best way to go.”

If the medical profession has muchimprovement to do, Faulds Wood is also verycritical of the role of charities and patient organ-isations in helping to combat the disease. “I havefound that people were not embarrassed to talkabout bowel cancer, they just didn’t think aboutit. But some charities don’t make money out oftelling you that this is a curable disease. Theyprofit out of frightening you, to the extent that Ithink the subject has become more taboo nowthan it was. I find it appalling that charities arerunning campaigns such as ‘Shit Scared’, whichwas run with £200,000 of UK National Lotterymoney. I hate the slogan ‘Dying fromEmbarrassment’ – it wasn’t me being embar-rassed, but my doctor failing to recognise mycancer. We can do much better than make peo-ple feel they’ve brought it on themselves.”

As she adds, the raw survival figures do notreflect the excellent chances for younger peoplelike herself in making a full recovery, and thereare good chances too for those whose cancershave spread to a few lymph nodes. Further-more, symptoms such as rectal bleeding arevery common – about one in five people have itin any one year, and it is common and normal inyoung people. “Mike Thompson has a slide of apenguin on an iceberg – if the penguin and theiceberg together represent the total number ofrectal bleeders, only the penguin’s head is can-cer.” Getting the messages across about symp-toms in a non-scary way has been a major plankof her work.

She left Beating Bowel Cancer for a number

very bad month for TV. I looked miserable oncamera – and I was, because it was so upsetting.”

Afterwards, she received about 28,000 let-ters. “I spent months answering a catalogue ofhuman misery. The TV company had never seenanything like it. That’s when I decided to give upmost of my TV work and concentrate on bowelcancer.”

A key starting point was to follow up thesymptoms research she’d begun with DoctorKnows Best. She met Mike Thompson, a sur-geon based in Portsmouth, England, whose wife,a GP, had had bowel cancer, and who had amore than special interest in the disease. “I hadbeen asking people: where is the evidence forsaying that, for example, symptoms are probablypiles? I was told there isn’t any such evidenceanywhere worldwide, but ‘we all know what thesymptoms are’. But Mike had been keeping adatabase of outpatients with bowel symptoms inPortsmouth – hand-entering the data himself –and his instinct was that, if he could crunch thedata, he’d find symptoms were different fromwhat most doctors believed. He had 5,000patients in the database and I got him fundingfrom a colonoscopy equipment maker to take ayear off to do the work.”

The database, which 10 years later hasnearly 20,000 records, has shown, says FauldsWood, that symptoms are indeed different fromwhat was then standard medical school teach-ing. “Bobby Moore had the classic symptomsfor a one in six chance of colorectal cancer –that is, bleeding and persistent increased fre-quency of stools.” Having also set up a charity,Beating Bowel Cancer, in 1997, Faulds Woodwas able to publish new symptoms advice forpatients, and managed to enlist the then publichealth minister to launch it. By 2000, the gov-ernment had officially adopted the advice,which has been distributed in patient- andGP-friendly forms.

“It wasn’t me being embarrassed, but my doctor

failing to recognise my cancer”

CoverStory


of reasons, mostly too personal to go public onyet, and set up Lynn’s Bowel Cancer Campaign.In general, she is not happy about the way manycharities “have become fundraising machinesmainly to sustain themselves”, with large salariespaid to professional staff. “There is too muchfundraising and not enough focus on saving thepublic from disease. Is it a coincidence thatBritain, with the biggest charitable movement inEurope, has been among the worst for canceroutcomes?”

Public health messages, she adds, are justtoo important to leave to the voluntary sector,while the territorial disputes she’s seen betweenorganisations on who does what are ‘ridiculous’.

Working through the patients’ journey,Faulds Wood soon became involved in symp-toms investigation, using her clout to voice con-cerns made by others about poor training andoutdated techniques used in diagnosis. She setup a committee composed of the best people atdoing colonoscopy and the best at teaching it,tasked with coming up with formal trainingcourses for colonoscopists, and helped to findfunds for 10 new training centres around thecountry. The use of rigid proctoscopes and bari-um enemas, the latter still in wide use in someregions in the UK, were firmly in her sights, hav-ing had them herself.

“One of the best things I did was a talk in2002 at the Royal College of Surgeons in frontof 250 of the world’s leading surgeons. My feel-ing was, based on the Portsmouth database andtalking to doctors, that we could diagnose peo-ple better in a more patient-friendly way. Weshould be doing flexible sigmoidoscopy, not fullcolonoscopy or barium enema, on people withbleeding or change of bowel habit, because can-cers tend to be in reach of flexi-sig and it ischeaper and much less unpleasant. I askedthem to imagine they had rectal bleeding, andusing keypad voting I got them to choose whatthey would like themselves. Ninety percentwanted a flexi-sig. I was sitting next to the thenChief Medical Officer, and I said to him thatmost people in Britain couldn’t get it. Patientsneed to have as good an experience as possiblewhen hunting for this disease. Barium enema isa pretty unpleasant and costly experience.”

Training people in flexi-sig also helps identifypeople with an aptitude for the more difficultcolonoscopy, she adds.

Faulds Wood is now an old hand in negoti-ating the Byzantine world of British healthcarecommittees, and has become a campaigningpatient representative on the key colorectal can-cer meetings. “The most important committee Isit on is the National Bowel Cancer Auditproject, run by the UK’s Association ofColoproctology. It is looking at a number of vari-ables for measuring hospital performance,including deprivation in the local population.”

The plan is to publish performance data forcolorectal cancer treatment by centre, adjustingfor the worse outcomes in more deprived areas.But as Faulds Wood comments, centres will notbe publicly named for three years. “It is not justa surgical disease anymore. Outcomes dependon a team approach and an anonymous periodwill give poorer performers a chance to catch up.It could just be an audit clerk who’s not doingwell, when the clinical team is really good. Auditis expensive, but patients have a right to knowabout the hospital they are going to, and thereare some I would not go to at present.” Suchauditing is an area where Britain is leading inEurope, she adds.

Faulds Wood is a proponent of the conceptof the ‘uniquely informed patient’ – patientswith the skills to become role models and

Queen of PR. The media hadproved prudishabout coveringcolorectal cancerstories, so FauldsWood invited Prince Charles totalk about ‘bottomsand bowels’ on thenational news

CoverStory


advocates for others. She feels that across theboard, from local voluntary work to the highestplatforms, cancer patients are not being involvedenough, partly because there is a view that theydo not want to discuss their experience. “Butyou can’t shut me up about bowel cancer, andthere are plenty of others like me.” Patientsgroups do now have a welcome presence atmajor oncology conferences, she adds, but theyshould be integrated even more into the meet-ings, while the fact that patient advocates areusually the only unpaid people on committeesshould be addressed.

In the UK she has helped set up patient par-ties – social gatherings of bowel cancer patientsand their families, where they mix with healthprofessionals to feed back information on hospi-tal facilities, treatment and support. One reasonfor running these parties, she says, is to identifypatient representatives who may like to work oncommittees. Active bowel cancer patients aremuch more scarce than those who have hadbreast cancer.

Patient organisations can also help find peo-ple with familial predisposition, which FauldsWood has done on TV to find HNPCC (heredi-tary non-polyposis colorectal cancer) families,and to help doctors recruit people for clinical tri-als. “I’m doing a speech soon on patient com-munications. Doctors really need marketingskills to sell their trials,” she says.

“I’m also involved in a big seven-centre trialand looking at the value of follow-up. Extensivefollow-up can be very expensive, and with the

world changing so fast and recruitment so slow,by the time you get people in trials they can beout of date.”

There is also a question of finding out whattrials are actually being conducted. “At themoment patients can’t find out about trials. Oneof the most important things we are doing inECPC is pushing for a register in lay language ofclinical trials, including phase I, which the phar-maceutical industry don’t really want us to have.But it is very important that patients know fromphase I what’s out there.”

And while excited about new targetedtherapies and genetic research, she feels thereis a major funding imbalance between the endsof the cancer ‘cycle’, with relatively little spenton prevention, screening and early diagnosis.“The only good thing about colorectal cancer isyou can find it in a precancerous phase andnever need any drugs.” There also needs to bemore emphasis on quality of life, “leaving us asbodily intact as possible”, including preservingsexual function and the use of keyhole surgery.“We could reduce stomas from 25% to 10%,”she adds.

Faulds Wood was a cofounder of ECPC,and as the current president is heading a boardof other cancer survivors developing a number ofinitiatives from patient advocacy masterclassesto lobbying for the trials registry, while her inter-national schedule is starting to rival a top oncol-ogist’s itinerary, from talks at psycho-oncologyand gastroenterology conferences to being theonly overseas member of the US NationalColorectal Cancer Roundtable, which bringstogether doctors, business leaders and patientgroups.

ECPC is involved in designing the bowelcancer screening guidelines for Europe, and isbuilding a colon cancer patient group network.But in general it has become an umbrella groupfor all cancer groups other than breast, whereEuropa Donna already has a leading presence –a necessary step, says Faulds Wood, as it wouldbe impossible for all groups to get round a tablein Brussels.

Over 200 member organisations are nowin ECPC (and new ones are always welcomevia www.ecpc-online.org, she adds), and the

An alliance againstcancer. Faulds Wood,in her capacity aspresident of theEuropean CancerPatient Coalition,with EU HealthCommissionerMarkos Kyprianou(right), and the co-chairs of MEPsAgainst Cancer,Alojz Peterle (left),Adamos Adamou(centre) and LizLynne, at a MACconference, Brussels2006, which issueda call for action totackle the growingepidemic of cancer

CoverStory


masterclasses it runs are gearing up to unleash aformidable force of Euro-savvy patient advo-cates around Europe. “ECPC also runs the sec-retariat for MEPs Against Cancer (MAC,launched in March 2006). Alojz Peterle, the for-mer Slovenian prime minister, is co-chair ofMAC and also chairs the largest political groupin the European Parliament. The next ECPCsummit for accession countries will be inSlovenia in November, with high ranking offi-cials invited, and leads into Slovenia having the6-month European presidency where for thefirst time the focus is going to be cancer. We arereally having an effect.”

Lynn’s Bowel Cancer Campaign (www.bowelcancer.tv) is currently run from herLondon house and has a mix of regular and one-off events. “We put the emphasis on raisingawareness rather than just saying, ‘Give us allyour money’,” she says, mentioning 25 motor-bikers wearing ‘huge pants’ (message: ‘say pantsto bowel cancer’), who cycled the length ofBritain for the campaign. It was another clothingitem – ‘the loud tie’ – that got Prince Charlesinvolved. “We had a 17-storey-high, bright-redtie, handpainted by cancer patients, droppedfrom a building on the day. A friend who workedin TV called me and said, ‘Did you know you got£30 million worth of news coverage?’” She evenhelped the last Pope – who had bowel cancer –to launch a global awareness campaign.

She doesn’t think that as a ‘TV personality’she has any great advantage. “Other charities useexpensive PR people, and could do equally well,”she says. There has also been some criticism ofthe role of celebrities in urging people to go forscreening procedures that could be harmful andunnecessary. Faulds Wood agrees, noting she hasnever advocated that younger people withoutsymptoms have colonoscopies, and her commit-ment to developing evidence-based screeningprotocols and good information about symptoms

– and not propagating fear – is clear. She is verypleased though that England is now among thefirst countries with a national colorectal screen-ing programme for those aged over 60.

Home life for Faulds Wood revolves aroundhusband John Stapleton – also a well-known TVpresenter – and son Nick, who plays in a rockband called Damn Sly (“First I was his roadie,now I’m a groupie,” she says). Long walks – ahealth-promoting exercise that should be advo-cated more often, she adds – are a staple pastime.

Cancer work looks set to dominate her lifefor the foreseeable future, at least until what sheterms the ‘patient-friendly’ agenda is firmlyestablished around Europe. “I’ll know we’veachieved something when we all stop talkingabout partnership with patients and are actuallydoing it,” she says.

There needs to be more emphasis on quality of life,

“leaving us as bodily intact as possible”

Facts first. This leaflet tells youwhich symptoms youneed to worry about,and which you donot. Until Lynn’sBowel CancerCampaign fundedthe research onwhich this leafletwas based, neitherdoctors nor thegeneral public hadevidence-basedinformation to go on

GrandRound


Periodically articles appearin cancer journals revisit-ing the growing evidenceon the link between vol-ume and outcomes, and

contemplating what action, if any,should be taken in response.

Judging by the weight alone, theevidence that patients have worse out-comes if they are treated by physiciansor at hospitals with a lower case-loadof similar patients is pretty conclusive.

An overview published in 2002 ofa total of 135 studies (Ann Intern Med137:511–520) revealed that 71% ofstudies of hospital volume and 69% ofstudies of physician volume reportedstatistically significant associationsbetween higher volumes and betteroutcomes. This included 10 out of 12studies on pancreatic cancer surgery(showing a median difference of 13deaths per 100 cases), three out ofthree for oesophageal cancer surgery

(12 deaths per 100), two out of two onbreast cancer surgery, eight out of 15on colorectal cancer surgery, two outof five in lung cancer and three out offive in gastric cancer (see Table).

In studies that found no signifi-cant difference in outcome, theresults indicated either a relationshipthat fell short of significance or norelationship at all. There is almost noevidence of any inverse relationshipbetween volume and outcome.

This is all quite compelling stuff.So why is it that thousands of cancerdoctors treating small numbers ofpatients in small hospitals all overEurope do not feel compelled to stop?

There is now a general accept-ance that when it comes to “trickyprocedures”, such as pancreatic andoesophageal surgeries, it is the skill ofthe surgeon, and indeed the intensivecare unit, that counts most, and thisis likely to be lower in surgeons/ITU

departments that handle few casesa year.

However, variations in outcomesfor other cancers may not be so tight-ly related to volume – indeed thereview of the studies showed thatthey are not. For every study thatshows a volume–outcome relation-ship for gastric cancer, or ovarian orbreast cancer, there are two that indi-cate that the main cause of variationscan be explained by factors otherthan volume. Some point to failingsin the pathology, mistakes in the diag-nostic work-up, or incorrect stagingleading to over- or undertreatment.Others point to the absence of amultidisciplinary discussion, poorselection of treatment modality, usu-ally an under-referral to chemo- hor-monal or radiotherapy. Lack ofspecialist training and/or failure tofollow guidelines are also frequentlymentioned factors.

➜ Anna Wagstaff

Turn up the volume

If you had cancer, you’d want to be treated by experienced specialists working

within a specialised multidisciplinary team. So why are so many of Europe’s

cancer patients still being treated in hospitals whose case-loads are clearly too

low to provide this level of care?


GrandRound

OVERVIEW OF THE LINK BETWEEN HOSPITAL / PHYSICIAN VOLUME AND OUTCOME

Type of cancer Studies Studies with Median cases Median cases Median average Median absolutesurgery included a significant a year defining a year defining mortality rate difference

volume–outcome low volume high volume (range) in mortality rateassociation (range) (range) for high vs

low volume Pancreatic 10 9 5 (1–22) 20 (3–200) 9.7 (5.8–12.9) 13.0 (3.0–17.9)

2 1 1 and 9 10 and 42 8.0 and 12.9 7.0 and 10.2Oesophageal 3 3 5 (5–10) 30 (11–200) 13.9 (8.9–14.0) 12.0 (11.0–13.9)Breast 1 1 10 151 N/A a

1 1 10 50 N/A N/Ab

Colorectal 10 4 18 (10–84) 115 (18–253) 6.0 (3.5–12.3) 1.9 (-1.2–9.7)5 4 12 (5–21) 22 (9–40) 3.0 (2.0–6.0) 1.0 (1.4–1.9)

Lung cancer 4 2 7 (5–37) 19 (11–170) 5.5. (1.9–12.9 1.9 (1.6–3.9)1 0 22 132 1.9 1.1c

Gastric 3 1 10 (5–15) 63 (15–201) 10.9 (6.2–12.2) 6.5 (4.0–7.1)2 2 1 and 2 2 and 12 6.2 and 12.2 4.0 and 5.7

a Outcome data were for 5-year survival, not short-term mortality. Patients receiving care at the lowest-volume hospitals had a 60% higher risk for

death within 5 years than those undergoing surgery at high-volume hospitals.

b Patients with high-volume surgeons had better 5-year survival (odds ratio: 0.85)

c Difference in mortality rates between high- and low-volume surgeons was of borderline statistical significance (P=0.08)

Source: Ann Intern Med 137:511-520

There are three reasons to questionover-reliance on the volume=qualityassumption. Firstly, the correlationbetween volume and outcome, thoughreal, is an inconsistent and unreliablereflexion of the multiple underlyingfactors that really make the difference.It would therefore seem sensible forstrategies for improving outcomes toconcentrate on these underlying fac-tors rather than on volume.

Secondly, concentrating on vol-ume can have undesired side-effects– pressure to keep up personal vol-umes could, for instance, influence asurgeon’s decision on what treatmentto recommend for lower-risk prostatecancer patients.

Thirdly, adopting volume as aquality criterion would force manydoctors, departments and hospitals tostop carrying out certain cancer pro-cedures. This will mean some cancerpatients will have to travel further for

their treatment. For some patients,and some one-off procedures, thismay not be a problem. For patientswho are frail, very unwell, or find itdifficult to travel, it can turn analready bad experience into a night-mare. Why do this to patients if theoutcome benefit seen in largerhospitals can be replicated in smallercentres by replicating the multidisci-plinary structures, the diagnosticprocedures, the level of specialisation,the protocols or whatever is responsi-ble for the better outcomes?

There is another reason why manycancer patients are still treated incentres that don’t see a large numberof similar patients in a year – straight-forward self-interest on behalf of thedoctor and/or the centre. Many doc-tors in Europe are paid per patient orper procedure, and removing theirright to treat cancer patients whocome their way would hit their

income. There is also a certain statusinvolved in treating cancer, and doc-tors may resent the blow to theirprestige, or worry that giving up can-cer cases will affect their careerprospects. For many the main deter-rent to giving up treating cancerpatients is simply job satisfaction.

Similar mechanisms work at aninstitutional level. Hospitals are lesslikely to refer patients to a specialistcentre if they lose money as a result.There is also a fear within some localgeneral hospitals that if they concedethe principle with respect to one typeof cancer or indication, then bit by bitthey will lose more patients to special-ist centres and ultimately become unvi-able, and the hospital will be closed.

Pressure from self-interest can,however, also work in the oppositedirection, where large hospitals andspecialist centres may be looking toexpand in size and prestige.

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MOUNTING PRESSUREIn May 2003 an editorial appeared inthe Journal of the National CancerInstitute, entitled Taking action on thevolume–quality relationship: Howlong can we hide our heads in thecolostomy bag? The title referred tothe latest addition to the evidence onvolume–outcome, published in thesame issue. It showed that out ofevery hundred patients treated forcolorectal cancer, seven more deathswould be expected if the patient wastreated at a hospital dealing with lessthan seven cases a year than if theywere treated at a hospital dealingwith more than 20. Patients wouldalso be 7% more likely to undergo afull colostomy at the smaller centres.

While accepting the need to digdeeper into the factors behind thediscrepant outcomes, and agreeingthat “the better long-term solutionwould be to disseminate the compo-nents of practice that lead to betteroutcomes,” the editorial injected asense of urgency into the debate,suggesting the time had come to talkin terms of minimum volumes, wherea hospital whose admission rate wasbelow the minimum would have torefer patients to a larger centre. Theauthors pointed a finger at vestedinterests in the medical profession.“Colostomy rates or mortality ratesthat are unexplainably high forsimilar patients are simply notacceptable. If these decisions did notinvolve livelihood, prestige andpower, we would have demandedaction long ago.”

Three years later, however, the


same journal seemed to put the brakeson again. An editorial titled Transcen-ding the volume–outcome relationshipin cancer care, which accompaniednewly published findings on the vol-ume–outcome relationship in ovariancancer, warned against reading toomuch into published relationshipsbetween volume and outcome.

Reporting on the studies, it said:“higher hospital volume was associat-ed with lower two-year mortality, withor without case-mix adjustment – butthe relationship lost statistical signifi-cance (by conventional standards)once surgeon volume was enteredinto the equation” and “a modest pos-itive association between hospital vol-ume and overall survival remainedafter case-mix adjustment, but theassociation was no longer statisticallysignificant once surgeon volume wasincluded and weakened even moreafter accounting for whether thepatient had postoperative chemother-apy.” It then went on to make a casefor something that the study in ques-tion had not been designed to exploreand was therefore unable to drawconclusions about: “key elements ofovarian cancer treatment generallyconsidered to be quality enhancingand that may be associated with bet-ter survival… generally deliveredsuperior care.” The take homemessage was: more research lookingat more cancers in more detail isneeded before we take any action.

The principle behind trying toidentify the specific mix of struc-tures, processes and volumes thatcan account for statistical differences

in various outcome measures is sure-ly a good one. But there is a danger ofbeing sucked into a level of detailwhere it is hard to draw any mean-ingful conclusions. Worse still, itbecomes very easy for anyone withtheir own agenda to pick and choosethe evidence to suit their argument,which risks bringing the integrity ofthe whole debate into question. Theresulting confusion and scepticismserve only to reinforce inertia to mak-ing changes to a status quo that isknown to be letting many patientsdown.

COMMON SENSEBob Haward, recently retired profes-sor of cancer studies at St JamesUniversity Hospital in Leeds, UK, gotto know this area of literature very wellwhen, at the end of the 1990s, he wasgiven the task of helping improve theUK’s poor survival rates through draw-ing up guidance for treatment of themajor cancers. He advocates the useof common sense.

He points out that whether theconclusion regarding management ofa particular cancer is that whatmatters most is volume (be it surgeonor hospital), or a correct choice oftreatment modality (implying a multi-disciplinary approach), or level ofspecialisation, or correct diagnosticprocedures, the practical implica-tions all point in the same direction.Against very low case loads.

“There is a simple logistics thing.If you are setting up a sarcoma teamwith people who are knowledgeableand experienced, you can’t do this for

“Taken together, the evidence paints a consistent

picture that must be taken into account”


a population of 100,000, because theteam would be meeting about onceor twice a year. A breast team canfunction with a population of100,000. A sarcoma team can’t.”

A similar argument applies withspecialisation. “If you go back to theoriginal work done in the West ofScotland, for instance, they foundthat the specialist gynaecologist gotbetter results than the general gynae-cologist, who got better results thanthe general surgeon operating onovarian cancer. That gradation fromgeneralist to specialist is a reasonablyconsistent theme in a modest num-ber of papers in the literature. So thatsuggests there may be somethinggoing on. But of course if you are aspecialist in something you are likelyto be doing a lot more of it, so thatoverlaps substantially with this wholequestion about volume and out-come.”

As for the evidence that volumehas an independent effect on out-come, Haward believes it is robust,and applies far more widely thanpancreatectomy and oesophagectomy– in particular when you go beyondthe usual outcome measures of post-

operative complications or survival,to look at the quality of life thesepatients are left with.

The evidence cited in the JNCIeditorial that colorectal patients are7% more likely to be given a fullcolostomy if they are treated in asmaller hospital is echoed by figuresfor full mastectomy in breast cancer.Experience counts when it comes togetting accurate results from a sen-tinel node biopsy, avoiding damage tothe axillary nerve, and even minimis-ing the cosmetic damage where fullmastectomies are warranted. Forpatients, this translates into loweringthe risk of lymphoedema, preservinggood arm and hand function and bet-ter body image. The story is similar forgynaecological and prostate cancers,in terms of protecting patients’ sexualfunction, continence and fertility.

Volume can also be importantwhen it comes to certain diagnosticprocedures: in addition to the sentinelnode biopsy, the quality of mammog-raphy, and endoscopic colopancre-atography have been shown toimprove with frequent practice.

Finally, practice and experiencecan also breed confidence. There is

now evidence from a range of cancers– testicular, gastric, and germ cell – toindicate that patients do better withdoctors who do a lot of that particulartype of treatment, because when com-plications arise, they are less likely tobe blown off course and deviate fromthe protocol.

Haward freely admits that none ofthe evidence, taken alone, is of thequality physicians expect when draw-ing up guidelines. But taken together,he argues, it paints a consistent pic-ture that must be taken into accountwhen considering how to structurethe delivery of cancer services – evenif some doctors or hospitals lose outas a result.

“People feel there is a rough jus-tice in using this [minimum volumes]to determine policy. There is a feelingthat if only you could work hardenough and disentangle what it isabout high volume that gives thegood outcomes, we could all do it inour low-volume centres and get asgood outcomes as they do. I don’tthink this washes.

“I agree there is a rough justiceaspect to it, and there probably aresome clinicians in small centres who

Looking ahead. The evidence and common sense indicate that patients’ chances of surviving with a good quality of life are likely to be higher if theyare treated by teams who specialise in that sort of work

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get as good results as their colleaguesin the bigger centres, and there aresome poor services in bigger centres.But in general I think we ought to betaking this literature seriously, and tryto organise services in such a waythat we provide the configuration ofservice that is most likely to lead tothe best outcomes. Certainly weshould be eliminating the thing thatmost people would agree is unsatis-factory, which is very low volumecomplex-procedure work.”

And that is exactly what happenedas the UK was divided into 34 cancernetworks, where each was asked toensure that all patients were treatedby multidisciplinary teams withexpertise in the relevant cancer andwith a minimum expected case load,according to the population it served.For colorectal cancers this was speci-fied as a minimum population of200,000, for oesophago-gastric cancerteams and rare head and neck can-cers, such as thyroid cancer, as aminimum population of one million,and for pancreatic cancer teams, twoto four million.

Inevitably, the policy createdresentment among some of those wholost their right to treat cancer patients.


That’s life, says Haward. “No doctorhas the divine right to practice medi-cine any way he or she sees fit.” Thehealth service, he says, isn’t there tolook after doctors’ needs, they are inthe health service to look after patients.

He does feel, however, that pos-ing the issue of minimum volumes asa stark choice between whether ornot to centralise specific cancer serv-ices may have been unhelpful andcould have contributed towardspolarising the debate.

STRIKING A BALANCEHaward points out that even where anelement of care needs to be cen-tralised, that does not mean that thetotality of care needs to be centralised.He says that one of the most satisfyingaspects of the UK policy developmentwas the widespread recognition thatcancer care is multidisciplinary at thelevel of deciding clinical managementand organising who does what, andhow. “We’ve tried to strike a balancebetween different institutions and thepersonnel in the community and localhospitals as well as more specialisthospitals. We have tried to encouragethe idea that good cancer care is apartnership between community and

local hospitals and more specialist andmore remote services. It is not all ornothing.”

In practice, he says, the systemhas shown it can take advantage ofopportunities to keep treatmentslocal. One such opportunity arosewhen the number of non-surgicaloncologists in district general hospi-tals more than doubled as part of thecancer plan. “In ovarian cancer youprobably do need to centralise thedecision about what is the mostappropriate form of chemotherapy,but very often you don’t have to cen-tralise its delivery. And networks havetaken the spirit of Calman-Hine [thereport behind the UK reorganisa-tion], namely that the specialist teamneeds to think about what manage-ment the patient should get, butmany are now quite satisfied thatplatinum-based chemo can be safelydelivered by many of the district gen-eral hospitals, so there is no need forpatients to come all the way to thelarger hospitals to get it.” Efforts arealso made to keep palliative care asclose to home as possible while stilloffering a specialist multidisciplinaryservice.

One way this local care deliveryhas been achieved is through video-conferencing, which allows, forexample, palliative care specialists ormedical oncologists delivering chemoat district hospitals to take part inmultidisciplinary meetings involvingregionally based specialist teams.

If cancer continues to becomemore like other chronic diseases overthe next 10–20 years, Haward saysthat the current network structurecould easily adapt further to include,for instance, community-based can-cer clinics run along the same linesas diabetes clinics, and a far greaterlevel of patient self-management.

Some voices still urge caution

• Good quality cancer care requires specialist pathologists and radiologists to give adetailed and accurate diagnosis, a specialised multidisciplinary team to decide onthe best treatment plan for each patient, and specialists, with strong back-up, tocarry out complex or tricky parts of the treatment.

• Smaller hospitals are unlikely to have enough patients to merit employing special-ists in every cancer, or to merit regular multidisciplinary team meetings. Doctorstreating low numbers of patients can not develop the skills and expertise of their col-leagues treating high numbers of patients every day in specialist centres.

• Patients pay the price with a lower chance of survival and a higher chance of havingtheir lives blighted unnecessarily by loss of bowel function, loss of a breast, loss oftheir sex life or their fertility.

TOO FEW


until further research has been con-ducted, but there are indications thatthey may be running out of time. Inthe US, the Leapfrog Group, a coali-tion of around 140 public and privatepurchasers of health care, has adopt-ed minimum volume quality criteriafor pancreatic resections (11 or moreper year) and oesophagectomies (13or more), and is keeping other cancertreatments under review. ManyEuropean health insurers are begin-ning to look at following suit – surgi-cal complications, tumour recur-rence and metastatic disease all costextra to treat, so the payer shares theinterest of the patient in getting itright first time.

In Switzerland, where the 26 can-tons have for centuries guarded theirindependence fiercely, attempts arebeing made to rationalise cancer serv-ice delivery across the country.Defining minimum volumes whereappropriate is one principle. “The fed-eral office of public health has given amandate to different people to define[minimum volumes] and to try to getthe figures incorporated into theinsurance process,” says Reto Obrist,a medical oncologist from the Vallaiscanton, and a key player in the devel-opment of the Swiss national pro-gramme against cancer. “One couldimagine that in a couple of years,insurers will only pay if such and suchintervention is done in a hospital witha minimum volume.”

Insurance companies are alreadyflexing their muscles, insisting, forinstance, that patients participating intrials using peripheral stem cell trans-plantation for lung cancer would bereimbursed only if they were treatedat a particular centre in Lausanne.Obrist expects similar restrictions tobe placed on pancreatic resectionsand, possibly, oesophagectomies. Buthe is painfully aware that the problem

goes deeper than that. Despite recentprogress towards concentratinggynaecological cancer services in spe-cialist hospitals, for instance, Obristadmits that in his own canton, onaverage every gynaecological surgeonoperates around three ovarian cancerpatients a year, “which is awful, but Ihave no means to change that”.

He says that there is a certain envyof the French, “because they canimplement things in a top-down man-ner. We are not in that situation, so wehave to work from the periphery up.”

There are hospitals that are decid-ing of their own accord to stop doingprocedures they feel they have insuffi-cient expertise in, and in Switzerlandthis trend may speed up considerablyif insurers decide not to pay separate-ly for the costs of treating anycomplications that may arise. Othersare calling in experts from regional spe-cialist centres to take on trickyoperations. Some are even paying sur-geons with low volumes not to operate.

Patients are also increasingly tak-ing matters into their own hands bychoosing to travel sometimes long dis-tances to be treated in hospitals thatcan show they have a high case loadand good results. It is an option that

may work well for them, but there willbe many more patients who are lessassertive or less able to travel whoremain behind in hospitals with ever-dwindling case-loads.

Pressure to stop doctors treatinglow volumes of cancer patients is nowbuilding from some of the profession-al bodies. In 2000 the EuropeanSociety of Mastology became the firstEurope-wide professional oncologybody to issue guidelines over mini-mum case loads. Their recommenda-tions for specialist breast units includ-ed a mandatory requirement that theunit as a whole “must be of sufficientsize to have more than 150 newlydiagnosed cases of primary breast can-cer,” and that individual breast sur-geons “must personally carry out theprimary surgery on at least 50 newlydiagnosed cancers per annum.”

The guidelines have been wel-comed by many breast cancer patientgroups, including Europa Donna,and have been referred to in aEuropean Parliament resolution. Theresponse from Europe’s medicalcommunity, however, has been moremuted. In Switzerland, says Obrist,the guidelines have not gone downvery well in the profession. Karin

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• Concentrating certain cancer services in specialist centres that treat a minimumnumber of patients or cover a minimum catchment population means some patientswill have to travel further.

• For patients who are less used to being far from home, have poor access totransport, have no friends or family to help them, and have an arduous route totravel – possibly daily for weeks at a time – travelling to a specialist centre can bean ordeal, particularly if they are already feeling very unwell.

• Ideally cancer services should be organised to allow patients to receive eachelement of their care package as close to home as possible without compromisingquality. Transport facilities and ease of access have to be considered when choosingwhich hospitals to designate as specialist centres.

TOO FAR

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Jöns, a breast cancer survivor andMEP, has complained that inGermany hospitals are bandingtogether to give the appearance offulfilling the criteria without actuallychanging the way they work.

In the Netherlands, however, thenational scientific committee on breastcancer is proposing that EUSOMA’scriteria be adopted as national guide-lines. Furthermore, the country’s largercancer centres are arguing for all can-cer work to be concentrated in nomore than 20 hospitals across thecountry. This would be a majorchange, for instance, for the breastcancer patients living in the area cov-ered by the North NetherlandsComprehensive Cancer Care Network– one of nine such networks – whocurrently have 16 hospitals to choosefrom in their region alone.

Renée Otter, director of the NorthNetherlands network, fully acceptsthe need to refer patients needingtricky procedures, particularly for lesscommon cancers, to specialist cen-tres. However, she is convinced thatthe proposed level of centralisation forbreast cancer surgery cannot be justi-fied, and that the net effect would beto deliver a worse service for patientsbecause they would be forced to trav-el so far from home, for little benefit.

She and her colleagues decided toexamine the evidence from their ownregion, where hospitals have for yearsbeen recording detailed data on casemanagement. They wanted to findout whether differences in outcomecould be attributed principally to thesurgeon or to the ‘oncology manage-


ment and policy’ at the hospital, andwhat influence volume had on either.The outcome measure they used wasthe proportion of early breast cancerpatients treated with breast conserv-ing therapy (controlling for case mix).

Instead of the usual regressionanalysis, this study, accepted for pub-lication in Breast Cancer Research andTreatment, used a method adaptedfrom industry to look at the relativeimportance of differences at the levelof the patient, the surgeon and thehospital. Differences between sur-geons accounted for just over 5% ofdifferences in outcome, but exactlywhat made one surgeon better thananother was not clear. Membership ofthe regional tumour working grouphad the strongest effect; volume,defined as greater or less than 30patients a year, did not seem to play asignificant role. At the level of the hos-pital, which accounted for almost3.5% of outcome differences, volume(using a threshold of 100 patients) didplay a role, but the effect did not reachstatistical significance. What didstand out was the importance ofmultidisciplinary care – especially thecancer conference and the composi-tion of the multidisciplinary team.

Otter argues that EUSOMA itselfis “more focused on the cooperativespecialist multidisciplinary team – onprocesses and structure – than onvolume alone,” and feels that theNorth Netherlands study shows aslightly lower level of centralisationmay be safe, so long as these othercriteria can be fulfilled. But likeHaward, she recognises that the two

issues are inextricably linked, and thestudy concludes that “hospital volumeis not the final factor, but a minimumvolume is a prerequisite for well-organised care, e.g. multidisciplinaryteams and conferences.”

She believes that if insurancecompanies are going to set qualityindicators, in the case of breast can-cer the requirement should focus ontreatment via a specialist multidisci-plinary team that meets for somehours at least once a week. “If you arenot able to arrange this, because itwill take too much time from otherwork, this means that you do nothave enough patients and you shouldstop treating this kind of patient.”

The North Netherlands networkhas started looking at how groups ofsmaller hospitals can collaborate toprovide specialised multidisciplinarycancer services for patients drawnfrom a combined catchment popula-tion. Surgeons specialising in colorec-tal or ovarian cancers travel to assistwith operations in the smaller hospi-tals. Heavy use is made of videocon-ferencing to ensure the participationof specialist pathologists, radiothera-pists and all other members of theteam in multidisciplinary conferences.

The aim, says Otter, is to ensurethat around 70% of cancer patientscan be treated locally, with theremaining 30% of rare or difficultcancers being referred to specialistcentres. Time will tell whether thehospitals will be able to achieve therequired level of collaboration. “Ifthey are not willing to start with suchcommunication techniques, I will

“Specialists in colorectal or ovarian cancers travel

to assist with operations in the smaller hospitals”


not push them any more, and allpatients should be referred.”

Otter believes that local treatmentis worth fighting for. She talks of thetime breast cancer screening wasrolled out across the Netherlands. “Insome areas, where it is agricultural, thewomen came very late to the doctorand they all had T4 breast cancer. Itwas ulcerating. These kinds of peoplehave to work hard for their income,and they go on till they fall down. Ifthey come to the hospital usually it istoo late. But even when they come, ifthey are told they have to go 200 kmfrom their home, I wonder whetherthey will do it. Not all of them will.”

Such research as has been doneamong patients in the NorthNetherlands region has shown arange of attitudes. “If I rememberrightly a quarter of them said itdoesn’t matter how far, but I’ll go.Others said, it depends for whichkind of things I have to go elsewhere,and why I couldn’t get it here.”

Haward believes that doctorssometimes overemphasise the impor-tance patients attach to local treat-ment to suit their own purposes. Buthe agrees that if you are going to stopsmaller hospitals carrying out cer-tain procedures, it is important toexplain why.

He tells the story of what hap-pened when, shortly after the publi-cation of the Calman-Hine reportinto the reorganisation of the cancerservices, a proposal was made toclose some of the gynaecological can-cer services in a hospital in a town onthe south coast. “The local peoplewanted to keep the service, but thesupporters of Calman-Hine werearguing that certain patients shouldbe sent to a specialist centre furtheraway.” The health authority put thequestion to the public. It organised a‘citizens jury’ made up of a represen-

tative group of local people, includingpatients, and invited them to listen tothe evidence, and hear witnessesfrom both sides. “What was interest-ing was that when the citizens juryactually had the arguments laid out,they had no problem with certaintypes of patient needing to travel theextra distance.”

Not all patients have the samepriorities. And what may be accept-able to fitter, younger patients may betraumatic for elderly or very sickpatients. Cultural factors also play arole. Otter accepts that she mightthink differently if she were in theStates, but patients in theNetherlands, she says, are used tohaving good care close to home.

Haward has noted a ‘paradox’ atinternational meetings. “The coun-tries that were most concerned aboutthe whole business of local versusmore centralised services were thesmaller countries where even cen-tralised services weren’t very far awayfor patients. It was Israel, Hollandand the UK that were really both-ered. Countries like Canada, Swedenand Australia weren’t in the least bitbothered.”

It is an interesting observation, and

points to the potential for attitudes tochange, but it also points to the needfor health systems to find ways to takeaccount of the priorities of the patientsthey serve. Otter says that in theNetherlands, pressure from patientsassociations has “opened the eyes ofthe professionals to discuss betterwhat they can and what they can’tdeliver locally.”

Asking patients about their pref-erences and priorities regarding theway their cancer services are deliv-ered is important. But in many coun-tries, the whole issue of how best toorganise quality cancer services is notbeing systematically addressed byanyone, be they patient, professionalor policy maker. There is therefore asimpler question that health servicemanagers, administrators and policymakers needs to ask, and it this:Would you like us to look into theoptions and discuss them with you?”

There would be no need for a cit-izens’ jury to find the answer to thatquestion. And to echo the editorialthat appeared in the JNCI more thanthree years ago: If this question didnot involve livelihoods, prestige andpower, policy makers all over Europewould have asked it years ago.

GrandRound

Countries with highly centralised health systems can impose a structure on their can-cer services from above. Where no such powers exist, there are a variety of ways tomove towards greater referral of patients to specialist centres.• Insurance companies can refuse to pay for patients to be treated at hospitals that

don't meet certain quality criteria – including minimum volumes.• Professional bodies, like EUSOMA, can define minimum criteria.• Patients can boycott hospitals that don't fulfil minimum criteria.• Hospitals can choose to refer patients to the nearest major centre, or call in sur-

geons from more specialist centres.• Hospitals within a given region can club together and decide which will specialise in

what; they can refer patients between themselves.

TURNING UP THE VOLUME

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Spread the word

Specialising in a cancer with very poor prognosis, Heine Hansen is as keen as anyone to find

new therapies that can improve survival. But he also believes that significantly better results

could be achieved using currently available treatments, if only everyone knew about and

followed best-practice guidelines – and he has done more than most to ensure they do.

Heine Hansen initially consideredusing his considerable talents totend the forests of his nativeDenmark. Happily, he optedinstead to go into medicine,

where his efforts to improve the quality of can-cer care have had an impact worldwide.

A revealing moment came during our inter-view for this article when Hansen reached forhis collection of photographs and chose a groupshot of himself with Eastern European col-leagues in preference to an image of himselfalone. Team building and working has been acentral theme throughout Hansen’s career, andhe had to be encouraged to hunt out the portraitphoto shown opposite.

Hansen believes that it is through buildingstrong relations at national and international lev-els with other medical professionals (physicians,nurses, basic and translational researchers) anddecision-makers, as well as, importantly, withpatients and their families, that progress can bemade in finding better treatments and cures forthe range of diseases that makes up cancer.

➜ Emma Mason


Hansen chose to specialise, early on in hiscareer, in one of the most intractable and diffi-cult to treat – lung cancer. Now, aged 68, andwith a personal chair as Professor of ClinicalOncology at the University of Copenhagen,Denmark, he looks back over the past decadesand sees three important threads runningthrough his work: lung cancer, the search fornew drugs, and the importance of communica-tion at all levels through team working.

“I have been lucky that I have had, and stillhave, very good co-workers around me, so we area team, and team work and team spirit is animportant part of one’s professional life, particu-larly if you have activities that you want to initi-ate and you want to implement,” said Hansen.

The activities he has initiated and achievedthrough his team working and networking haverelated to pursuing better treatments not onlyfor his own patients, but for patients Europe-and world-wide, via international collaboration.He was a founder member, office-holder andmoving light of the International Association forthe Study of Lung Cancer (IASLC), an active

Masterpiece


and influential member and office-holder of theEuropean Society for Medical Oncology(ESMO), and a member and office-holder ofother organisations too numerous to list here,but which include the Danish Cancer Society,the American Society of Clinical Oncology(ASCO), and the European Organisation forResearch and Treatment of Cancer (EORTC).

That all patients, wherever they are, shouldreceive the best possible treatment and manage-ment of their disease, irrespective of their social

and financial status, is an article offaith with Hansen. He believesthat if people can gather evidenceabout what cancer treatments areworking best in which countries,and then present this to the deci-sion-makers, change will be morelikely to happen. This task ofinforming doctors, patients anddecision-makers is what he hasbeen doing through the IASLCand ESMO.

“The impact, the impression, isbigger than if individual physicianssay ‘we want that’. This is the forceof working internationally andworking with guidelines that arecommon across Europe, for exam-ple. In general, physicians are notusing sufficient time to discussthese items and let the decision-makers understand what the situa-tion is. Sometimes they are toobusy doing other things, but thisaspect of presenting information isvery important,” argued Hansen.

A GLOBAL CURRICULUMHansen counts his work on this asa key success in his career.Probably it is best illustrated by his

development of the Global Core Curriculum inMedical Oncology – the result of collaborationbetween ESMO and ASCO, which started lifeas an initiative to help colleagues in Eastern andCentral Europe.

“We set up the Task Force for Central andEastern Europe just after the Berlin Wall camedown, because we felt there was a need to getout and see what was the situation, what werethe options, how could we meet, how couldwe assist them (if they wanted – and that’s

“Physicians are not using sufficient time to let

decision-makers understand what the situation is”

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important) not with money, but with knowledge,experience and so on.”

Hansen’s aim was to be guided by hisEastern European colleagues, and for them tosay what they needed, rather than have helpimposed on them from outside. Together theyset up a series of meetings and courses that wereopen not just to medical oncologists, but tonurses too. “This was unusual in Eastern Europeat that time, when the physician was king,” saidHansen.

The meetings revealed the need in EasternEurope for clinical recommendations for cancertreatment to help with the education and train-ing of medical oncologists and to influencedecision-makers. “This is what ESMO hasdeveloped since. It has been used in the argu-

ments in individual countries to improve treat-ment and to help the politicians and decision-makers get to the point where they have to say‘well, we are part of Europe, we are going intothe EU, we also need to improve our healthcaresystem and see what is happening in the othercountries.’ This was what gave us the idea fordeveloping a core curriculum not just forEastern Europe, not a European one, but a glob-al one.”

So, out of the needs of Eastern Europe wasborn an initiative which would help medicaloncology around the world, and which hasassisted in another aim – that of having medicaloncology recognised as an independent speciali-ty in Eastern Europe; Bosnia-Herzegovina,Croatia, the Czech Republic, Hungary, Latvia,

Hansen’s aim was for them to say what they needed,

rather than impose help on them from outside

A job well done.Heine Hansenfounded ESMO'sTask Force forCentral and EasternEurope in 1996.It was wound upat a farewellsymposium at theESMO congress thisSeptember, its taskhaving beensuccessfullyconcluded. The TaskForce is picturedhere at its secondmeeting, heldin 1997 inCopenhagen.Hansen is seatedon the left

Poland, Slovakia and Slovenia all recognise med-ical oncology as a specialty now.

The Eastern European initiative is an exam-ple of Hansen’s ability to capitalise on currentevents. Another example comes from the begin-ning of his career, when he started to specialisein lung cancer at a time when few people wereinterested, because survival rates were so poorthat it seemed pointless.

Hansen’s medical career started when hehad to choose between studying forestry or med-icine after leaving high school. Influenced by afriend’s medical textbooks, he chose medicineand went to the University of Copenhagen.However, his interest in the natural world haspersisted throughout his life. He loves gardeningand he owns a summer house on the coastwhere he goes fishing.

Having chosen a career in medicine almostby accident, Hansen said: “It was chance that Iwent into oncology.” After completing his med-ical degree and spending time in the air force, hemarried Lise, who is a nurse. They both felt itwas too early to settle down in Denmark, so, atthe suggestion of a family friend, he obtained apost in the haematology department atMontefiore Hospital, Bronx, in New York.

The year was 1967. “This was the periodwhen there were major advances in the treat-ment of haematologic malignancies.” Theseadvances had stemmed from the discovery, dur-ing World War II, that mustard gas loweredwhite blood cell levels, especially lymphocytes.

“In 1967 I saw patients up in New York withlymphomas who were treated with chemotherapy,and I saw dramatic activity. So this was exciting.”

A year later he was appointed to a new wardthat was being set up by the National CancerInstitute, in collaboration with the VA Hospital,in Washington DC to explore the use ofchemotherapy in tumour types that were com-mon in war veterans, such as lung cancer.

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“During this period I got started on clinicalresearch, and that included, first of all, lung can-cer, but also new drugs, and these became thetwo main lines of my clinical research, whichcontinued after I came back to Europe.

LUNG CANCER IS NOT JUST LUNG CANCER“We observed that lung cancer was not just lungcancer. We identified small-cell lung cancer as aspecial clinical disease entity. Small-cell lungcancer has certain characteristics that make itdifferent from the other histologic types. Thereare two very typical characteristics that we iden-tified during that period, and these were that ithas a tendency to spread early and wide. This wedetected by doing routine evaluation of thepatients by bone marrow examinations andlaparoscopies with scopes and biopsies from theliver. So we found out that these patients hadmuch more disease at the time of diagnosis thanone would otherwise expect.

“The other particular aspect of this diseaseis that it is very chemo-sensitive. At that time itwas identified as the most chemo-sensitive of alllung cancers. If you don’t treat small-cell lungcancer, the majority of the patients die within afew weeks.

“We started to give first one drug, then twotogether, then three together, and we saw that alot of patients responded to the treatment andthey got better clinically, and their symptomsdisappeared. But unfortunately, as time went on,the tumour recurred. But at that time, what wasimportant was that we could identify a group oflung cancer patients where chemotherapy hadan effect, and a worthwhile effect.”

Hansen wrote many publications on lungcancer and new drugs at this period, followed bya doctoral thesis on bone metastasis in lung can-cer after he returned to the University ofCopenhagen in 1973 – where he has remainedever since. It was while he was in Washington

Out of the needs of Eastern Europe was born

an initiative that would help oncology around the world

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that he first started his international collabora-tions, setting up a trans-Atlantic study betweenthe NCI and the Mayo Clinic and the largestclinic in Cape Town in South Africa. “This wasvery unusual then,” said Hansen. “But it workedout. We treated patients the same way, with thesame drugs, same doses, we had a protocol andwe published together. And that was really thebackground for creating the IASLC. That hasled to many years of work for me, in lung cancer,at an international level.”

SPREAD THE MESSAGEHansen was executive director, founding editor,and chief editor of the journal Lung Cancer for20 years, and president of the IASLC. “We setup a lot of activities around the world to spreadthe message about lung cancer, that there weretreatments, that there were different treatmentsfor different types and stages and so on. It pro-vided the opportunity to meet on a global basis,because lung cancer is a global disease.”

More than 30 years on, there have beensmall improvements in the treatment and sur-vival of lung cancer, but there has been very lit-tle improvement in five-year survival rates,which are still poor, ranging from around 5% to15% in different countries.

Surprisingly, perhaps, Hansen does not findit depressing to specialise in a disease where theprognosis for patients is so poor. This is partlybecause he treats a range of other tumours too,such as testicular and ovarian cancers, whichhave much better survival rates. But it is alsobecause he knows that, while he may not alwaysbe able to cure his patients, he can offer themthe best care possible in the meantime.

“With the lack of success we had, one hadto realise that it’s also important that, inde-pendent of whether the patients get cured ornot, the majority of cancer patients need pro-fessional management. During the period thatthey get treatment, and also during follow-up,they need a lot of support, their family needssupport and, again, you need teams, you needphysicians, you need good nurses, who all haveto work closely together. Of course, sometimeswhen you go home you feel the pressure, youfeel it’s been a tough day.” Being able to talk

with Lise helps him to unload the day’s prob-lems and he values her perspective on patientmanagement.

There is no doubt that Hansen is a verypatient-focused physician. “If everything goeswrong, you can always go down to the patientsand be around the patients and then you getextra strength to keep going, and that is why Iam still seeing patients.” He holds a clinic twicea week, in addition to his other duties.

Hansen is optimistic about the future forlung cancer patients, although he doesn’t expectdramatic improvements in survival in the shortterm. For a start, their public profile is rising andthey are less likely to be regarded as low prioritybecause of smoking, social class and low survivalrates.

“Things are changing for the better. Moreand more resources are going into basic andclinical research and we have also seen betterresults in the last decade than previously. Butthere’s a long way to go, and for that reason wereally have to focus on prevention.”

As with many other cancers, biological ther-apies, with treatments tailored to the individualpatient’s genetic profile, are the way forward forlung cancer, Hansen believes.

“There are some drugs available already thatare changing the overall treatment of lung can-cer. At present, it is mainly in advanced disease,because that is where the clinical trials havetaken place, but that is changing. Drug compa-nies know lung cancer patients are a large groupand worth investing in, so they are working ondeveloping better agents, that are bettertolerated, have fewer side-effects and can betaken in tablet form, for instance, rather thanintravenously.”

GET IT EARLY, TREAT IT WELLThere is one key aspect of lung cancer that canmake a significant difference in survival rates:how early the disease is detected and howaggressively and competently it is treated. Oneof the reasons why the US has better survivalrates than Europe, Hansen believes, is becausepatients go to their doctors earlier and thentheir disease is treated more quickly and moreaggressively.

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“In Europe you often find a negative attitude todiagnosing and treating lung cancer from manyphysicians, because they think survival rates areso poor that it doesn’t really make any differ-ence. In the US, the attitude of doctors andpatients is somewhat different. Technically theyare ahead of Europe, and when patients havesymptoms they get a better work-up, they arereferred to the right specialist, and they willprobably be treated by a multidisciplinary teamincluding a chest physician, surgeon, radiother-apist and medical oncologist.

“In Europe, if a patient comes in with somemodest symptoms, doctors will often take a ‘waitand see’ attitude, which means that lung canceris diagnosed later, when it is harder to treat. Thisis a crucial difference, because if lung cancer isdetected early, the five-year survival rates, whilenot impressive, are about 50% for early cases. Ifthe patient has gone to the right place, at theright time, with the right stage [i.e. early-stage

cancer], then they have a good chance of acure.”

At home, one of the ways that Hansen ismaking a contribution to improving Denmark’scancer survival rates is as a scientific advisor inoncology to the Danish Health Authorities.Together with a colleague, Hans van der Maase,he co-ordinates a panel of experts to whom indi-vidual doctors, hospital departments or evenpatients can appeal for advice on the best treat-ment for a particular cancer. This ‘second-opin-ion’ panel makes recommendations that mayuphold the current approach, but equally canrecommend a different approach, a differentdrug, or even a different hospital in anothercountry that can treat the disease better.Patients can then have access to these treat-ments completely free. This scheme has onlybeen running for two years, but already Hansenbelieves that it is making a difference not only topatients, but also to translational research,because the panel co-ordinates six new experi-mental units as well. In addition, it helps toinform doctors about the latest treatments.

“Already there are disease entities which wecan treat that we couldn’t two years ago,” hesaid. He counts the panel of experts scheme asone of his successes, and hopes the idea mightspread internationally.

Hansen says he is cutting his work back abit so that he has more time to enjoy his family.He and Lise have two children, a son, Thomas,and daughter, Marie, and two twin grand-daugh-ters, Frederikke and Rosemarie, with anothergrandchild expected later this year. “What I doin the future depends on the situation, on ideas,and whether I think I can make a difference. Ifyou still feel that you can offer something, thenyou have an obligation to those around, becauseyou have a lot of experience that you can offer.But, as Jonas Salk once said: ‘Our greatestresponsibility is to be good ancestors’.”

“If you still feel that you can offer something,

you have an obligation”

Best practice is the same in any language. The development of theESMO-ASCO Global Core Curriculum in Medical Oncology grew out ofHansen’s concern to offer assistance to oncologists in Eastern Europe

What is small, stickyand worth morethan $50 millionand counting? An-swer: America’s

Breast Cancer Research Stamp, a so-called ‘semi-postal’mail stamp that hasnot only raised millions for cancer re-search but has also made history by be-ing the biggest-selling ‘commemorative’postage stamp in the country’s history.

Semi-postals are a simple idea –by adding an extra charge to the nor-mal face value of a stamp, they havebeen used for many years in othercountries to raise money for charita-ble causes such as the Red Cross, tohelp pay for various Olympic Gamesand to support war efforts. Afteradministration costs the rest of theextra goes to the cause – the breastcancer stamp currently sells for45 cents, compared with the normal39 cents first-class value. But thebreast cancer stamp is a modern phe-nomenon among semi-postals.

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Record-breaking stampraises sticky questions

Concern that vital research is being side-lined for lack of funds prompted US breast cancer

surgeon Ernie Bodai to campaign for a special fundraising stamp. Despite the 6-cent

mark-up, it has outsold all previous commemorative stamps including one of Elvis Presley.

Yet Bodai has met with harsh criticism from some surprising quarters.

For a start, when it was approved in1998 it was the first ever semi-postalissued by the US Post Office – byand large, semi-postals have beenmost popular in Europe. Second, thebreast cancer stamp can lay claim tobeing one of the most popular semi-postals of all time worldwide, captur-ing Americans’ hearts and minds sowell that 900 million have been sold– more than a commemorative ElvisPresley stamp of the early 1990s(which was just a standard stamp).And the idea for the stamp camefrom one man – breast cancer sur-geon Ernie Bodai, who surmountedformidable obstacles to get the stampintroduced.

Bodai, who is director of theBreast Health Center at the KaiserPermanente Point West facility inSacramento, California, explains howthe idea came to him. “I was preparinga lecture on the history of breast can-cer surgery and looked into art history– you can trace the history of treat-

ment by looking at often gory surgeryartwork going back to ancient Egyptiantimes. It was then I thought about astamp for breast cancer – and amoment later, I thought we could priceit higher to raise money for research.”

A DROP IN CANCER RESEARCHThis was in 1996, a time, adds Bodai,when it was becoming apparent thatthere was a serious drop in cancerresearch in the US. “Clinical trials hadbecome much more expensive thanksto a growth in paperwork and thesheer cost of the new therapies thatwere coming out. While in the early1990s we were funding 70% of allproposals, today it’s in the 20% range.There just is not enough money tofund studies – and what if one thatgets turned down has the crucial pieceof information we need?”

It is this nagging thought that hasdriven Bodai in his stamp quest –that and the lack of progress in breastcancer treatment, typified by the long

➜ Marc Beishon

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A cool $50 million. Ernie Bodaiwith his Breast CancerResearch Stamp

“While in the early 1990s we were funding 70%

of all proposals, today it’s in the 20% range”

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procession of women presenting athis clinic for surgery. With this aim,and realising it would take aGovernment Act for the US PostOffice to issue its first semi-postal,he initially wrote to more than 50women in Congress and the Senate –and received absolutely no replies.

That made Bodai “furious” andwas the start of a virtually one-mancampaign to lobby for the stamp.Although he received some help fromcertain people, in particular cancersurvivor Betsy Mullen, who hadformed a women’s breast cancer infor-mation group, Bodai says he was moreor less on his own as he trod the corri-dors in Washington in a two-year cam-paign that was hugely costly in termsof his energy, time and expenses.

The painful details of how Bodaimanaged to get support for the stampand see it through to a GovernmentAct – the Stamp Out Breast CancerAct – and the issue of the stamp in1998 have been written upextensively in the US. Much of thestory is about how someone with nolobbying experience goes through thesteep learning curve of working outjust how to get one government billonto the books ahead of the manyhundreds put forward each year.Bodai says he enlisted the help of hisown profession – the cancer societiesand the American College ofSurgeons – to write to Congress, andhe and his close lobbying colleaguesmade early breakthroughs in gainingthe support of congressmen andwomen whose own lives had beenaffected by breast cancer.

But two issues stand out for Bodai,particularly as he is now working tohelp introduce semi-postals in othercountries. The first is the likely atti-tude of a post office. “The big fear ofthe US Post Office, and of other postoffices I have dealt with elsewhere, isthat if they start a breast cancerstamp, they will have the Alzheimer’s,heart disease and lung cancer peoplecome after them as well, and mostpost offices do not want to be both-ered with fund raising.”

Indeed, the US Post Office hasbeen inundated with requests forsemi-postals for many other causes,and two others have since beenissued – one for the victims of the9/11 terrorist attack, the other fordomestic violence. But back in 1996,the Post Office, says Bodai, wasopposed to issuing its first semi-postaland even issued a non-fund-raisingbreast cancer awareness stamp of itsown the following year, “trying toderail my stamp. It didn’t work.”

TERRITORIAL DISPUTESThe second – and still ongoing –issue has been a lack of supportfrom the very organisations Bodaithought he could rely on, namelythe large breast cancer charities.For Bodai, this is a straightforwardterritorial dispute. “Several influen-tial organisations that should havesupported us didn’t, because theyweren’t going to be the recipients ofthe funds,” he says. “Most of theseorganisations are run by strongfemale personalities and they alsodon’t like me because I’m male.

“I put great effort into establishingrelationships with them as I reallyneeded their help with lobbying, butevery time I went to Washington theythought I was stealing their thunder.I even said, ‘I’ll give you the projectand never come back if you get thejob done.’” The largest such charity,the National Breast Cancer Coalition(NBCC), is the one he has most inmind.

While not opposing the stamp,Fran Visco, NBCC’s president, com-ments: “We feel that the stampdoesn’t raise much money and abro-gates the US Congress’s duty to appro-priate sufficient funds for breast can-cer research. It is a band-aid thatmakes Congress look good, others feelgood, but doesn’t really do enough. Wedo not support the effort, in partbecause we only support those effortsthat we believe will have a majorimpact on breast cancer. The stampdoes not fall into this category, and, inour opinion, fails to effectively raise thepublic awareness of the vast resourcesneeded to eradicate breast cancer.”

Naturally, Bodai disagrees. Thestamp, he says, has played a big part inraising awareness – the many millionssold is testimony – and while the $50million raised for research may be arelatively small slice of breast cancerfunding over the last decade, it hasgone to important work. The money ischannelled via two bodies: 70% to theNational Institutes of Health/NationalCancer Institute (NCI) and 30% tothe Department of Defense’s (DoD)Medical Research Program. It haslargely gone to research programmes

“Many of the grants are for around $100,000,

and have gone to scientists who are not yet established”

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outside mainstream funding, such asthe NCI’s Insight and ExceptionalOpportunities awards, and the DoD’sIdea awards.

Many of the grants, says Bodai,are for amounts around the $100,000mark, and have gone to new scientistswho have not yet established them-selves, “Not to the good old boys’ clubwho get the same money every yearfrom the same places. And in theGAO’s report there is a list of six majoradvances that have been funded bythe stamp.” (The GAO – US GeneralAccounting Office – produces reportson the effectiveness of the fundraisingstamps; approval for the breast stamphas to be renewed every two years.)

This research includes the iden-tification of new proteins not previ-ously known as autoantigens ofbreast cancer, a new molecule thatinhibits the activity of epidermalgrowth factor, and a new tumour sup-pressor gene deleted in many breastand ovarian cancers, related to a geneknown to be important in identifyingcolon cancer. Many of the researchstudies, adds Bodai, could be impor-tant for cancers other than breast.

A GLOBAL JOURNEYBodai has barely let up in his crusadesince the stamp was first issued, trav-elling to many speaking events, set-ting up the Cure Breast CancerFoundation (www.curebreastcancer.org) as an organisation behind theinitiative, and helping to promote thestamp worldwide, the ‘global jour-ney’, as he calls it. Olivia Newton-John’s charity, the Liv Foundation, is

a partner in this global effort. A semi-postal has been issued in Hungaryusing the same design as the US –Bodai was born in Hungary and cameto America as a child – and he saysthere are also plans in Romania andSlovenia. He also became a cancersufferer himself – he was diagnosedwith prostate cancer in 2000 and cer-tainly supports the introduction of astamp for this disease, noting that itsprofile (in numbers affected) is simi-lar to breast cancer in the US.

He’s grateful to corporate sponsor-ship that has helped offset some of themany thousands of his own dollars hehas spent, and companies such asKellogg’s have also featured the stampon their packaging – promotion worthmillions. But there are wider ques-tions about the stamp and the ‘busi-ness’ of breast cancer charitygenerally, explored in a new book bySamantha King, professor of kinesiol-ogy and health studies at Queen’sUniversity, Kingston, Canada, entitledPink Ribbons, Inc.: Breast Cancer andthe Politics of Philanthropy.

Says King: “Breast cancer hasbeen transformed into a market-driven industry. It has become moreabout making money for corporatesponsors than funding innovative waysto treat breast cancer. Fundraising forbreast cancer has developed into ahighly competitive market in whichlarge foundations and corporationscompete with one another to attractthe loyalty of consumers – in this case,well-intentioned members of the pub-lic wanting to do their part in the fightagainst the disease.”

HARD TO SAY ‘NO’ In a chapter devoted to the breastcancer stamp, King writes that itsoon became a bipartisan, politicallyacceptable measure that was “hard tosay no to” (especially because ithelped shift the onus from the stateto volunteerism and consumerism).The stamp, she argues, is just moreof the same in America’s history of‘big spending’ on cancer research andthe recent rise in the ‘pink ribbon’-style awareness industry, rather than“evidence of a widespread and newfound concern about the disease”.Breast cancer politics, she says, caninstead become very partisan if issuessuch as health inequalities are raised.“The stamp became … a mechanismfor limiting how people think about,speak of, act upon, and constitute thedisease,” she concludes.

Bodai is unconcerned by such con-troversy, and indeed notes himself theinfighting for funds and kudos amongbreast cancer and other ‘disease’ chari-ties. He recognises that much moreneeds be done to address America’shealth inequities in breast cancer, butis unrepentant about the basic researchfunded by the stamp. Given the strug-gle to get the funding stream running,he’s not about to rock the boat in theUS, but says other countries can andshould channel funds toward bettertreatment and screening.

And before the Internet wipes outthe postage stamp for good, Bodai – ina still largely one-man effort – willcontinue to enthuse others in theworldwide research community to posttheir desire for a new source of funds.

“The stamp became … a mechanism for limiting

how people think about ... and act upon the disease”

There is a smattering ofapplause in the airy pressroom of the WashingtonConvention Center astoday’s headlines ticker

across the bottom of the televisionscreen. CNN has picked up the newsthat a billion people will developcancer this century, unless somethingis done.

Around the room, journalists arefiling stories from the World Congressof the International Union AgainstCancer (UICC). Some of these jour-nalists work for media in Africa, Asia,Latin America and Central Europe,countries where up to 70% of newcancers occur, but where cancer isoften seen as a non-issue.

This mismatch prompted threeorganisations to support healthjournalists from these countries toattend back-to-back conferences inWashington DC in July – the UICCWorld Congress, and the Health orTobacco Conference – to developtheir knowledge.

The American Cancer Society

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Helping the mediato get the message

How do you report on an issue that is publicly taboo and personally sensitive, and where

the data are scant and the professionals can be unhelpful? Seven journalists who gathered

at the UICC conference in July found they could learn a lot from one another.

(ACS) the European School ofOncology and the UICC selected jour-nalists from daily newspapers, TV, anews agency and a specialist magazine:• Jacqueline Montes Eguino, repor-

ter for La Razon newspaper inBolivia

• Kristina Baxanova, reporter for bTVBalkan News Corporation, Bulgaria

• Ashraf Amin, assistant head of thescience desk on Al-Ahram newspa-per, Egypt

• Yaa Oforiwah Asare-Peasah, deputynews editor of the Ghana NewsAgency

• Viktoria Kun, reporter for Nepsza-badsag newspaper, Hungary

• Conrado Generoso, editor in chiefof the Medical Observer, in thePhilippines

• Timothy Makokha, deputy healtheditor of The New Vision newspa-per, Uganda

All these journalists know that canceris highly significant in theircountries, but is given little prioritycompared with HIV/AIDS, TB,malaria, diabetes, and diarrhoea.

Public awareness of cancer is low,while fear and stigma inhibitdiscussion. The journalists acceptthat the media must bear someresponsibility.

Jacqueline Montes Eguino says:“The media is not doing its job. We donot have enough articles talking aboutcancer. People with cancer don’t haveaccess to surgery or medicines and,unfortunately, they just die. In ruralareas people think they can use tradi-tional medicine and a poultice.”

Most people seek treatment fartoo late, and so, says TimothyMakokha, cancer is seen as “onedisease that consigns you to an earlydeath”. Viktoria Kun agrees. “If yousay ‘cancer’, most people understand‘death’, but when you know aboutthis subject you can face it muchbetter.”

JOURNALISTS LACK ACCESSTO DATAIf journalists are to play their part incombating fear and stigma, they needaccess to facts and to experts. When

➜ Peter McIntyre

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journalists lack access to basic infor-mation, this contributes to one-dimensional reporting that stokespublic alarm rather than improvingawareness.

Conrado Generoso says:“Journalists who write for the tabloidsor television often get their factswrong and give people wrong infor-mation. The health community hasto help to train journalists on healthreporting so they can understandwhat doctors talk about and translatethe stories into something the laymancan understand.”

Kristina Baxanova believes that themedia often tells only one side of thestory – failing to highlight the benefitsof treatment and prevention. “InBulgaria most people understand thisas an incurable disease. Most stories wecover are about bad examples. We alsoneed to cover good examples of how toprevent or cure or talk about cancer.”

But it can be difficult to find the

facts. From Uganda, Makokha com-plains of “stifling bureaucracy,unnecessary secrecy and a deliberateunwillingness to give information”. Bythe time a journalist has obtainedpermission to access information, thedeadline for the story has often passed.

Official information is of suspectquality. Generoso says: “In thePhilippines even data on cancer inci-dence is hard to get from governmenthealth agencies – and is often outdat-ed. There is no centralised agencythat collects data and makes themavailable.”

Ashraf Amin points out that incountries like Egypt, with no nation-al screening programme, data aboutcancer are often derived only frompatients seen at national hospitals orfrom WHO estimates. In Bolivia, too,the pattern of disease is clouded.“There is no official information orstatistics about cancer cases, becausemost of them are treated by the pri-

vate sector or by traditional medi-cine,” says Montes Eguino.

ETHICAL ISSUESJournalists, just like doctors andnurses, face ethical problems daily,with pressure put on them from out-side forces, and by a natural tensionthat exists within journalism betweenthe need to make headlines and theneed to protect people from harm.

There is a particular problemwhen companies or individuals pro-mote drugs or treatments, and evenresponsible reporting can fueldemand which poorer countries haveno way of meeting.

Kun, who won an ACE (AwardingCancer Enlightenment) award for herarticles about the situation inHungary, sees a need to balance sto-ries about scientific advances with anunderstanding about the availabilityof treatment. “I have ethical problemsbecause there are many people who

On the job. The seven sponsoredjournalists filed stories to theirnewsrooms from the UICC andTobacco or Health conferences. Thetrip provided an ideal opportunity tofind out more about cancer, and todiscuss with colleagues about how toimprove media coverage of thedisease. From the left: JacquelineMontes Eguino (Bolivia), ConradoGeneroso (the Philippines), KristinaBaxanova (Bulgaria), TimothyMakokha (Uganda), Rennie Sloanfrom the American Cancer Society,Ashraf Amin (Egypt), Viktoria Kun(Hungary), and Yaa Oforiwah Asare-Peasah (Ghana)

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cannot access these medicines.Recently, a professor came toHungary and was ‘selling’ a storyabout a wonder drug. I was againstpublicising this because it puts awrong idea into the heads of patients.But I could not do anything. They sawthis on TV as a wonder medicine.”

Amin points out that journalistsare not in a strong position to knowwho provides good treatment andwho is making extravagant claims.“The media has a problem becausemany people claim to have curedcancer. And sometimes people’s can-cer does seem to have been cured.We are not doctors and we are notable to say what is scientific and notscientific, and the doctors themselvesare not that confident about it.”

Another issue is the extent towhich it is right to use individualhuman stories to make articles aboutcancer more interesting.

Generoso encourages his journal-ists to humanise stories with the con-sent of the individual and their doctor.“Don’t tell me that 8,000 people die ofbreast cancer. Find me one personand put a face to the story.” To someextent, says Viktoria Kun, this canbenefit the patient. “Often people saythat they feel better because theycould speak to someone.” Yaa Asare-Peasah believes that human storiesalso help people make good choices.“We have to tell the story to explainwhy you should go to the doctor.”

But Montes Eguino does notagree, and her paper, La Razon, doesnot use individual patient stories inthis way. “Of course it makes moreimpact to use one case, but we don’tdo that in my paper. We write aboutthe situation generally, not aboutindividuals.”

Amin sees another dilemma. “Iam ashamed to say that rich andpowerful people do not appear on our

screens; it is just the poor people whodo not have the means and facilities.The NGOs put patients on the mediato get more money. We take picturesor show how a mother is suffering.The patient did not really have achoice. They have been used. I donot know if it is ethical or not.”

Television reporter Baxanovabelieves that journalists face a diffi-cult choice. “There is still a lot ofstigma attached to cancer. Patientsare often shy and afraid to talk. Ishow the back of the head, or inter-view the doctor. But if we want toinfluence people and be more effec-tive, you have to show people. If youshow only statistical data and doc-tors, it is not easy for the audience tounderstand.”

SCIENTIFIC LANGUAGE BARRIERSThere are technical problems forjournalists in non-English speakingcountries, as most research materialis in English, and reporters need ahigh level of skills to access this, tounderstand and to explain it in theirown languages.

Amin, who writes for a mass-cir-culation Arabic paper in Egypt, saysthat this can lead to conflict betweenjournalists and doctors: “Most jour-nalists do a double job as journalistsand translators, searching for the eas-iest term for the readers and givingthe scientific meaning for the doc-tors. Most scientists want to see it inthe paper with all the scientificdetails. As a journalist, we have tomake it readable. Sometimes the textis accurate but not readable. Orsometimes journalists do their workand make it readable, and scientistsrefuse to be interviewed and say thatmedia people are not accurate.”

These issues are poorly under-stood by doctors and nurses, whooften steer clear of the media and

have little confidence in dealing withjournalists. But by working with jour-nalists, they can affect the way thatcancer is reported.

CHANGING PRIORITIESCertainly, Baxanova felt that her ownpriorities had changed from intensiveexposure to global experts at theWashington conferences. “I can showthat if we can treat cancer early, wecan have incredible results. I wasvery interested in the vaccinationprogrammes. I think I should bestronger in fighting to do stories onthese issues.”

Asare-Peasah said it had broad-ened her horizons. “I have donehealth reporting for many years, butthis has been an eye opener. It makesme think that in Ghana we are farbehind on a cancer control pro-gramme. I am going to focus a lotmore on cancer issues in the future.Media reporting is very poor com-pared to other health issues.”

For Generoso, the conferenceshighlighted an imbalance in globalnews coverage. “We get the newsthrough news agencies about break-throughs in the developed world, butvery little about what is happening inAfrica. That was an eye opener. Wehear about AIDS and malaria, but Idid not realise that cancer was a bigproblem there.”

Amin believes that journalistscan help countries to learn from eachother. “I was very touched by the pre-sentations from Africa, as if we werein the 18th century while others weretalking about new technology. Themain message I come away with isthat people are denied treatment andservices because of lack of resources.We should be learning from eachother and how to help each other.Maybe we don’t listen to each otherenough.”

Last week, a chapter closed as I leftthe staff of the editorial family thatis the Guernsey Press. But a new,exciting one starts. I was recentlytold about a man diagnosed with

cancer who decided to ditch his old, safe lifeand instead live for the moment.He has since travelled the worldand experienced many of the chal-lenges he had previously onlydreamed about.

I feel a bit like that. This issomething that cancer does to you.It still has the power to change theway you feel about life, relation-ships, faith, self and the part thatis frequently entwined in youressence as a person – work. Whilea growing number of cancer patients can stillretain some health and actively live with theirdisease – which is happening more and morebecause of improvements in cancer treatments– so more people ‘with a diagnosis’ are decidingthey want a change of direction in their life.

Until now my usual work has been my ther-

BestReporter


Reporting cancer from the inside

Catherine Kalamis of the Guernsey Press won a Best Reporter Award 2006 for a series of

articles based on personal experiences of living with cancer. Below we reprint A life-changing

moment, where she explains why good information is so vital to patients and she sends out a

message about turning a threatening change into something positive.

apy, giving me grounding during an emotionallyrough time. Holding on to that has been impor-tant to steady myself in the new world of uncer-tain futures. It’s important for employers to beunderstanding during this phase and, fortunate-ly, mine has been. But now the time has come to

make a change, to break free fromthe safe, or the ‘same old, sameold’. So I am now fulfilling a goalto achieve something meaningfulfor cancer patients.

Three of us are launching abrand new patient foundation forpeople diagnosed with neuro-endocrine tumour [NET], the littleknown and relatively rare form ofcancer I was diagnosed with lastyear. It sounds a simple idea but

already it’s proving quite a mammoth task, with48 pages of admin to plough through, a businessplan to prepare and a legally binding governingdocument to write before we can apply for reg-istration with the UK Charity Commission. Andthat’s before the really demanding work begins.But why, when there are hundreds of other

BestReporter


cancer charities? There is a simple answer. Myexperience showed me that there is currentlyvery little information ‘out there’ about NETs.

I found a lack of general, lay informationwhen I was eventually diagnosed with a NET inFebruary 2004, three months after first falling ill.There is some to be found on specialised medicalwebsites, or those created by drug companies.There is a bit more info about a specific type ofNET called carcinoid tumours, which are themost common of the group – there is even a NewYork based group called the Carcinoid Fighters –but there is no centralised information aboutneuroendocrine tumours as a whole.

I have discovered in the past year thatalthough this type of cancer can affect children,there are no paediatric specialists in the countryand no specific information for parents. Andthere are only 12 consultants in the UK whohave an interest in the disease, but they also doa lot of other work. My experience is not unique.I have since met many others who were pre-sented with a shattering diagnosis but found it

hard to access solid, meaningful information,especially at a time of great distress and anguish.

Then there were family and friends. None ofmine had ever heard of neuroendocrine tumoursand all of them expected me to have the ‘tradi-tional’ treatments of chemotherapy and radio-therapy because they heard the word ‘cancer’.They still ask me about my treatment when, atpresent, I am not having any. I had to find out bitby bit and use my own words to explain thatthese tumours are, generally, slow-growing can-cers even when they have metastasised to othersites in the body, which is what has happened inmy case.

And chemo and radiotherapy, although use-ful for some patients with aggressive disease,might not always be the first-line course of treat-ment immediately after diagnosis. There are,however, other treatments and it’s a judgment asto when they are brought into play. None of thisis very easy to explain to someone who just asksabout your welfare. Every clinic I have attendedhas been oversubscribed and it is common in

Good news. As a patient,Catherine Kalamis hasused her own cancerdiagnosis as anopportunity to refocus herlife. As a journalist, shehas used her pages in theGuernsey Press to tell herreaders about theexperiences of patientsand their families, and tosend out a message ofhope: there is life after acancer diagnosis – and itcan be pretty good

BestReporter


the UK that the doctors don’t have much time togo through everything, or repeat it until it is fullyunderstood.

NETs can become more aggressive, sopatients need continual monitoring with scans,blood and urine tests to watch for the signs.Another peculiarity is that tumours can expresshigh levels of hormones, but it’s not always thatstraightforward, and some types don’t. Althougharound 2,000 new cases are diagnosed eachyear in the whole of the British Isles, it isthought there are many people who have a NETbut don’t yet know it. I could have had mine fora decade or so already. If only there was someway of detecting them more quickly, thenpatients could have surgical intervention andperhaps even a cure. But the vast majority ofpatients who seek specialist referrals havemetastatic and often inoperable, and thereforeincurable, disease.

Speaking to other patients waiting in theNHS [National Health Service] clinic inLondon, I learned that it had often taken themyears before getting a proper diagnosis. Thecommon story was that GPs [general practition-ers] or even specialists had dismissed theirvague symptoms as irritable bowel syndrome or,in one alarming case, as being ‘all in the head’.So the more I discovered about my disease themore the gaps in information, awareness, andunderstanding became acutely obvious.

A dynamic specialist NET nurse has had thesame thoughts for years. She had been dreamingof providing more information for patients, butshe was simply too busy, with some 550 peopleon her books. Then I met another patient, whocoincidentally had just given up his job in med-ical PR at a time when I was considering takingmy own ‘gap year’ to regroup and rethink. Thethree of us spoke many times on the phone andwe even had a two-day meeting here inGuernsey.

In September [2005] I took the bull by thehorns and approached a world-ranking sports-man – the snooker player Paul Hunter – whohad publicly revealed he was suffering from thesame disease. At the RAC club in Pall Mall,London, we all met and talked. He has sinceoffered us several thousand pounds from hischaritable resources to start what by now we hadnamed the NET Patient Foundation. From therewe have not only had his offer of help to publi-cise NETs, but also the first public fundraisingevent (when he switched on the BatleyChristmas lights and a street collection was heldfor the foundation), and there is the possibilityof a celebrity ball in September, the organisationof which may be filmed for TV with all proceedscoming to the foundation.

We shall see how this translates, but it looksand sounds promising. Suddenly the words andideas have turned into something real. And nowthe hard work begins. From a starting position ofnothing, we have enough for phase one of thefoundation’s plans, to obtain charity registrationin the UK, approach and appoint trustees and ahigh-profile patron and begin to put togetheraccurate, impartial and, hopefully, empoweringinformation.

The NET Patient Foundation aims to have anew magazine for sufferers and their familiesthat will not only explain the disease, but offermany practical ways to live positively with it. Wewant to build a state-of-the-art website andlaunch a moderated patient forum wherepatients from across the country – later Europe,we hope and who knows, globally – can talk toeach other. One of the real issues affecting NETpatients is a feeling of isolation. Unlike breastcancer patients, you probably won’t find a largenumber in your town or village – here inGuernsey there may have been three or four inthe past few years. But you could be talkingabout a larger regional number, and so the

One of the real issues affecting NET

patients is a feeling of isolation

* Jane Tomlinson tells her own story in What's brave about having cancer? p 60This article was first published in the Guernsey Press on 9 December 2005, and is reproduced with permission

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foundation aims to organise a national roadshow, setting up regional patient support groupswith the support of the specialist consultantswho, we hope, will back us.

And then there are future campaigns thatneed to be organised – to raise awareness in thegeneral population about the disease as well asfront-line health professionals. And to supportpatients who find they are subject to the ‘post-code lottery’ for drugs prescribed to control hor-monal surges that some tumours can produce.In some areas of the UK, health trusts refuse topay for these injections even though theyimmeasurably improve the quality of life forsome people.

This has all come about because of my owndiagnosis of a life-threatening illness for whichthere is no current cure. It brings matters sharplyinto focus. It has become clear that living ‘in thenow’, for the minute and the moment, is whatshould be important, and following your dreamsand ideas, however large or small, should alwaysbe a possibility. I am not going to totally give upwriting for the Guernsey Press – writing for news-papers has been my life for 30 years and it’s ahard drug to give up – but I will have more flexi-bility and it may not be quite so often.

But I shall be moving to a new sort of work,following the lead of many others who havebeen diagnosed with a shattering illness and yetfound a way to move forward positively. LanceArmstrong and Jane Tomlinson* are two suchexamples although I would never hope to aspireto what they have achieved. My goals are moremodest. Armstrong, the Tour de France cham-pion who has overcome a terrible cancerprognosis, has become a champion for cancer‘survivors’ and is devoting himself to spreadingthe word about living well with a diagnosis.Briton Tomlinson, who has terminal breastcancer, has raised a million for charity and takenon the most gruelling sporting challenges. I amnot quite in their league, but they show thatthings can be done even when you have disease.

However, I do want to use my experience to

hopefully help create something positive forother cancer patients. It’s a bit like the peoplecaught up in the Boxing Day 2004 tsunami.

They also want to ‘do their bit’ and are high-ly motivated, perhaps because it is a way of cop-ing, of dealing with what has happened: all thatsadness, death and destruction.

Similar things happen to many of us in thecancer club who can still function, it seems. Withcancer there always seems to be someone in aworse position than you but who is coping mag-nificently and bravely in the face of real adversity.Behind it all is a motivation to improve things forothers who come along behind, because of ourown, perhaps rather poor, experience.

Look at the Pink Ladies [a Guernsey breastcancer support group] and the work they haveachieved locally. Jo Allen is one of the fivefounding members. She said: “The group hasgrown bigger than anyone could have expectedand now has over 90 members. I was privilegedto be actively involved in running this supportgroup from its inception until May this year. Icannot express how important this support is toso many women: we’re not just talking aboutemotional support and the benefit of others’experiences, but also the financial help we pro-vide with complementary therapies and so manyother helpful items.”

She has found her involvement extremelybeneficial. “Why did I get involved? Wellbecause it gave me a great sense of satisfactionknowing that what the Pink Ladies did made areal difference and that the road could be some-how easier for those who were diagnosed afterme. I’m also at my happiest when I’m helpingothers and the Pink Ladies gives the ultimateopportunity to do that.” Until you have beenthrough something like this, you cannot under-stand what it is like. “A diagnosis of any form ofcancer really does give you the opportunity to re-evaluate your life and to live for now and that’swhat this wonderful group of women do, whilstencouraging others in the process.” I think thatsays it all.

We all know that exercise isgood for you. We know that itprevents obesity, which islinked with heart disease, dia-betes and some cancers. But

what about the idea that exercise protectsagainst cancer, full stop?

The notion that the more youexercise, the more you protectyourself from cancer used tosound dangerously cranky. Notany more.

In the past five years, almostunnoticed, there has been a fun-damental change in the scientificconsensus about the relationshipbetween cancer and exercise.

Cancer Research UK, thebiggest independent cancer research organisa-tion in the world, hasn’t exactly been shoutingabout its new conviction, but the past year hasseen it state firmly for the first time that inactiv-ity increases your risk of cancer significantly,even if you’re not overweight, an idea that wouldhave been laughed at a decade ago.

BestReporter


The subject is complex, the story is clear

Overblown claims and contradictory messages on cancer can lead to confusion and scepticism.

Health journalist Simon Crompton was recognised in the 2006 Best Reporter Awards for the

clear and informative articles he has written for the Body&Soul section of The Times (UK).

Below we reprint an example, which throws light on the link between exercise and cancer.

It isn’t just talking about one kind of cancereither. Cancer Research UK is convinced thatnot moving around enough increases your risk ofboth colon and breast cancer, and says that inac-tivity may also be associated with cancers of thewomb, lung and prostate.

A turning point came at theLabour Party conference thisautumn [2005] when the charityheld a meeting launching a mani-festo for physical activity at whichProfessor Ken Fox, a BristolUniversity researcher funded byCancer Research UK, stated that“independent of other lifestyle fac-tors, you get a 20–30% reductionin all cancers if you are active.”

And, early next year, the chari-ty is to re-launch its Reduce the Risk campaignwith “be active” prominent among the more con-ventional messages to “stop smoking”, “eat anddrink healthily” and “be sun-smart”.

There has been a definite sea change,according to Professor Fox, who runs thedepartment of exercise and health sciences at

BestReporter


Bristol University. “There’s now undeniable evi-dence that exercise has a direct effect on can-cer, especially colon cancer and breast cancer,”he says. “I think the whole issue is just begin-ning to come on line with cancer researchorganisations calling for more research on can-cer and exercise.”

The evidence has been stacking up overmany years. The idea that exercise could preventcancer was conceived 20 years ago, when DavidGarabrant, a young assistant professor at theUniversity of Southern California, noticed thatdata on a cancer registry indicated that peoplewho had more sedentary jobs tended to get morecolon cancer. “I presented the data at a depart-ment meeting and they laughed at me; theyhooted,” he said recently.

But Garabrant is now a professor of epi-demiology at the University of Michigan and hiscontention has been backed up by study afterstudy. In the 1990s, large studies from Italy andthe US indicated that physical inactivity couldcause 13–14% of all bowel cancer cases. In thesame decade, a series of other studies in highlyreputable journals indicated that – astonishingly

– being active probably halves your risk of get-ting colon cancer.

The link with breast cancer has been estab-lished more recently. A series of studies between1997 and 2003, published in established jour-nals such as the Journal of the American MedicalAssociation and the New England Journal ofMedicine, found that being active reduced therisk of breast cancer by 30–40%, and seemed toprotect women both before and after themenopause.

Exercise seems to reduce the risk most inwomen who are active early on in life.

In Britain, a turning point came in 2002,when Professor Fox and his team from theUniversity of Bristol published an extensivereview of the evidence on exercise and cancer,concluding that not only could it help people torecover from cancer but the lack of it could be asignificant and direct risk factor. This came ayear after a review by the Scottish CancerFoundation and the Cancer Research Campaigncame to a similar conclusion on bowel cancer.

On womb, prostate and lung cancer, the evi-dence is less conclusive, although a recent

Good advice. Measuredand well-reasoned articleslike this one are far moreeffective than any front-pagescare story when it comesto helping people understandhow they can lower their riskof developing cancer

BestReporter


analysis of nine studies indicated that high phys-ical activity reduced the risk of lung cancer byabout 30%. And in a study in the new issue ofUrological Oncology [vol.23, pp463–464],researchers from the Harvard School of PublicHealth conclude that regular physical activityslows the progress of prostate cancer and mayreduce mortality.

Richard Davison, the director of policy andpublic affairs at Cancer Research UK, says theorganisation’s new public profile on thecancer–activity link reflects the number ofsound studies carried out in the field – and thenumber of funding applications on the subjectto the organisation. “I think perhaps physicalactivity has been ignored in the past,” he says.“The media tends to focus on diet and obesity,and perhaps it’s time that changed.”

There may be another reason we don’t hearmore about the cancer–exercise link. Scientistshave a natural fear of overestimating the bene-fits, when further research is still needed to fullyunderstand the association.

One of the foremost researchers in the field,Dr Anne McTiernan, from the Fred HutchinsonCancer Research Centre, in Seattle, says herfear is that people will start to believe that thereason they got cancer is that they didn’t exer-cise. In most cases, that’s likely to be untrue.

Some researchers, such as Dr Brian

Henderson, from Southern California’s KeckSchool of Medicine, are also sceptical abouthow accurately existing studies have measuredthe benefits of exercise on its own. It’s hard tomeasure how much exercise someone is takingand to eliminate other lifestyle factors thatmight affect their vulnerability to cancer, suchas diet. Studies need somehow to ensure thatthey cancel out the complication that obesity isalso linked with cancer (see box).

However, even taking such scepticism intoaccount, there has been a significant change inour perception of the disease and its causes.Though lack of exercise is way behind risk fac-tors such as age, smoking and diet, CancerResearch UK quotes estimates that it accountsfor 5% of all cancer deaths. So if you want to acton the evidence, its advice on exercise is thesame as every other organisation with a healthpromotion message. Try to exercise moreintensely and more frequently than you do now,and aim for at least 30 minutes a day.

But you don’t need to be slim for there to bea positive effect, and simply increasing yourdaily exercise dose by taking the stairs ratherthan the lift, or going for a walk in your lunch-break, could make a difference.

HOW CAN EXERCISE PROTECT US?

■ Exercise can reduce levels of insulin, some hormones and other human chemicals called growth factors, which dictate howand when cells divide. At high levels these substances can encourage tumour growth.

■ Some types of breast cancer are linked to high levels of the female hormone oestrogen. There is some evidence that exer-cise causes a weaker version of oestrogen to be produced by the body, reducing the risk of breast cancer.

■ Exercise also stops us accumulating fat. Studies have shown that being overweight can increase the risk of many cancers,including those of the breast, bowel, kidney, oesophagus, and womb. This is because body fat is active tissue which pro-duces hormones, and high levels of some hormones can promote cancers.

■ Physical activity leads to more bowel activity, so it may protect against bowel cancer by causing cancer-causing substances inundigested food to pass through the bowel more quickly. Exercise can also protect against bowel inflammation, which can belinked to some cancers.

■ Being active may reduce lung cancer risk by improving lung efficiency, reducing the time cancer-causing chemicals spend inthe lung and lowering their concentration.

This article was first published in Body&Soul, The Times (www.timesonline.co.uk) on3 December 2005, and is reprinted with permission

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agent directly to the liver. Given thesteep dose-response curves and nar-row therapeutic windows associatedwith these agents, significantlyenhanced cytotoxic drug deliveryresults in higher intratumoural drugconcentrations and higher consequenttumour-cell kill.

There are a few interpretativeproblems with the current study: thetrial is rather small, especially forthe marker component of the study;it is not a true comparison of thecontribution of hepatic arterialdelivery of chemotherapy, becausethe cytotoxic agents and theschedules for the two arms of thestudy are different; and it is possiblethat a degree of patient selectionoperated across the trial, as impliedby the surprisingly long medianduration of survival for patientsreceiving bolus 5-fluorouracil/FA.

Other well-designed trials com-paring HAI and intravenous

chemotherapy in this setting have notshown survival benefits for regionaldrug delivery.

The largest such study1 ran-domised patients to identical 5-fluo-rouracil/FA regimens administeredvia the hepatic artery or intravenous-ly. The use of ports rather thanpumps in this study may have con-tributed to a higher technical failurerate in the HAI arm and therefore tothe null effect.

It could be argued that HAIis technically cumbersome andexpensive, requires a laparotomy, andhas been bypassed by innovationsin the management of hepaticmetastatic colorectal cancer suchas intravenous combinationchemotherapy with irinotecan andoxaliplatin, the anti-angiogenic agentbevacizumab2 and the anti-EGFRantibody cetuximab. Review ofsequential clinical trial data frompatients with advanced colorectal

Arandomised study of intra-venous chemotherapy with 5-fluorouracil and leucovorin

(folinic acid [FA]) versus prolongedhepatic arterial infusion (HAI) offluorodeoxyuridine in patients withunresectable hepatic metastasesfrom colorectal cancer (see opposite)has shown significantly improvedoverall survival, response rates andtime to hepatic progression for fluoro-deoxyuridine HAI, although time toextrahepatic progression wassignificantly shorter. Are these datasufficiently compelling for us toconsider fluorodeoxyuridine HAIa new standard therapy for chemo-therapy-naive patients with hepaticmetastases?

The pharmacokinetic principlesunderpinning fluorodeoxyuridine HAIand 5-fluorouracil are compelling, asfirst-pass arterial extraction followingHAI delivers a large fraction (60–80%of the delivered dose) of the cytotoxic

➜ David J Kerr*

Does chemotherapy givendirectly to the liver improve survivalin patients with hepatic metastasis?

A study using hepatic arterial infusion to deliver treatment to colorectal cancer patients with

liver metastases is unlikely to lead to wholesale changes in clinical practice, but may spur new

studies into the role of local delivery of triple combination chemotherapy in these patients.

*David Kerr is Professor of Clinical Pharmacology and Cancer Therapeutics and Director of the National Translational Research Network in the Department of Clinical Pharmacologyat the Radcliffe Infirmary, Oxford, UK. This article was first published in Nature Clinical Practice Oncology 2006 vol. 3 no. 9, and is reproduced with permissionwww.nature.com/clinicalpractice, doi:10.1038/ncponc0566, ©2006 Nature Publishing Group


cancer suggests that median survivalhas risen over the past two decadesfrom around 6 months to 24 monthswith modern systemic chemo-therapy.3

On balance, however, the resultsof Kemeny et al. seem a timelyreminder that we should adapt HAIto embrace advances in systemicchemotherapy.

Ongoing trials are exploring HAIof oxaliplatin4 in combinationwith regional or systemic infusional

5-fluorouracil and bevacizumab orcetuximab.

Given the differential extrahep-atic progression rate seen in the cur-rent study, a number of these studiesare likely to unite regional and sys-temic treatment, but it could well bepossible to administer drugs that arenot limited by hepatobiliary toxicityvia the hepatic artery in order to sat-urate the liver, and allow ‘spillover’ togenerate equivalent venous concen-trations, toxicity and pharmacokin-

etic properties to conventional intra-venous schedules.

It is extremely unlikely that HAIfluorodeoxyuridine will be adoptedwholesale as a novel frontline therapyfor hepatic metastatic colorectal can-cer, but this paper will serve as animportant spur for the relevant phaseII triple combination studies to beinitiated using HAI chemotherapy.

Details of the references cited in this article can beaccessed at www.cancerworld.org/cancerworld

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SynopsisN Kemeny, D Niedzwiecki, DR Hollis, et al. (2006) Hepatic arterial infusion versus systemic therapy for hepaticmetastases from colorectal cancer: a randomized trial of efficacy, quality of life, and molecular markers(CALGB 9481). J Clin Oncol 24:1395–1403Background. Metastasis to the liver occurs in approximately 60% of patients with metastatic colorectal cancer, and mostpatients with these liver tumours eventually die of their disease. Whereas the blood supply for normal liver parenchyma isvia the portal vein, hepatic metastases receive most of their blood supply from the hepatic artery, so interest has beenfocused on the use of hepatic arterial infusion (HAI) for administering chemotherapy.Objective. To assess whether HAI extends survival and improves tumour response and quality of life in patients with colo-rectal cancer that has spread to the liver.Design and intervention. In this cooperative group trial, between 15 January 1996 and 29 December 2000, nine sitesrandomly assigned patients to receive either HAI with fluorodeoxyuridine, leucovorin (folinic acid [FA]) and dexametha-sone or systemic chemotherapy with intravenous infusion of fluorouracil and FA. Resection of the primary tumour hadbeen performed 3–4 weeks previously. No crossover between the study arms was permitted. All patients had histological-ly confirmed colorectal carcinoma with unresectable liver metastases over less than 70% of the liver parenchyma, and noextrahepatic disease on radiology. Patients with a previous or concurrent malignancy or impaired haematological or renalfunction were excluded. Outcome measures. The primary endpoint was overall survival; toxicity, tumour response and quality of life were alsoevaluated.Results. Patients receiving HAI (n=68) lived longer than those receiving systemic chemotherapy (n=67), with a medianoverall survival of 24.4 versus 20 months (P=0.0034). In comparison with the systemic chemotherapy group, patientsreceiving HAI had superior response rates (47% vs 24%; P=0.012) and longer time to disease progression in the liver (9.8months vs 7.3 months; P=0.034), but shorter time to extrahepatic progression (7.7 vs 14.8 months; P=0.029). Diarrhoea,neutropaenia, and stomatitis were more frequent in the systemic chemotherapy group than the HAI group. Bilirubin ele-vation occurred in 18.6% of patients receiving HAI, but this was temporary in most cases. Improved physical functioningwas observed in the HAI group at the three-month and six-month quality-of-life follow-up evaluations. For both methodsof treatment, women fared better than men. Median survival was 29.4 and 22 months, respectively, for women and menin the HAI group, and 20.1 and 18.3 months, respectively, for women and men receiving systemic therapy (interactionP=0.016). A greater proportion of men than women receiving HAI had biliary toxicity (37% and 15% respectively; P=0.05).Conclusions. HAI provides superior survival and better physical functioning than systemic therapy with the same agentsfor patients with metastasis of colorectal cancer to the liver.Acknowledgement: The synopsis was written by Petra Roberts, Associate Editor, Nature Clinical Practice

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improvement in overall survival withintraperitoneal cisplatin. Alberts etal.2 performed a direct head-to-headcomparison, whereas Markman et al.3

added two additional cycles ofhigh-dose carboplatin in the intraperi-toneal arm. Although the prior studiesdid not result in an NCI alert or achange in clinical practice, the data inaggregate warrant consideration offirst-line intraperitoneal therapy inthis group of patients. Before oneadopts the current regimen, severalissues deserve consideration.

GOG 172 compares three drugs(two intraperitoneal and one intra-venous) with two intravenouslyadministered drugs and a differentschedule. The intraperitoneal routeresults in a continuous infusion viathe intraperitoneal and intravenousroute. Only 42% of the intraperi-toneal arm received the assignedintraperitoneal therapy, and 18% ofpatients assigned to intraperitoneal

therapy received intravenous carbo-platin and paclitaxel after discontinu-ation of intraperitoneal therapybecause of toxicity. Toxicities result-ing in discontinuation of theintraperitoneal therapy includedproblems related to the accessdevice, abdominal pain with infusion,and intolerance to the higher doses ofcisplatin. How the number of cyclesof treatment affected survival isunknown.

When GOG 172 was designed,the results of GOG 158 were notavailable. GOG 158 reported animprovement in median overall sur-vival of 8.7 months (relative risk 0.84;95% CI 0.70–1.02) for patients treat-ed with intravenous carboplatin andpaclitaxel compared with those treat-ed with intravenous cisplatin andpaclitaxel.4 Although cross-trial com-parisons are not statistically valid andthe populations may differ, it is inter-esting to compare the differences in

Interest in the intraperitonealdelivery of chemotherapy topatients with ovarian cancer with

minimal residual disease followinginitial cytoreductive surgery has beenrekindled with the recent publicationof a Gynecologic Oncology Groupstudy, GOG 172. This study com-pared intravenous paclitaxel followedby intraperitoneal cisplatin and pacli-taxel, or by intravenous cisplatin, inpatients with stage III epithelial ovar-ian cancer (optimal cytoreduction).The authors reported a 15.9-monthimprovement in median overall sur-vival in those patients who receivedintraperitoneal therapy. The NationalCancer Institute (NCI) issued a bul-letin suggesting that, in women withstage III epithelial ovarian cancer,consideration should be given to theadministration of intraperitoneal cis-platin and a taxane.1

This study and two previous ran-domised trials demonstrated an

*Carolyn Runowicz is Director of the Neag Comprehensive Cancer Center at the University of Connecticut Health Center, Farmington, Connecticut, USAThis article was first published in Nature Clinical Practice Oncology 2006 vol. 3 no. 8, and is reproduced with permission.www.nature.com/clinicalpractice, doi:10.1038/ncponc0556, ©2006 Nature Publishing Group

➜ Carolyn Runowicz*

Should patients with ovarian cancerreceive intraperitoneal chemotherapyfollowing initial cytoreductive surgery?

A novel intraperitoneal chemotherapy regimen, trialled in the GOG 172 study, represents a

new standard of care for patients with optimally resected stage III ovarian cancer, but should

be offered on an individualised basis.


outcome between the GOG 158intravenous carboplatin plus pacli-taxel arm and the GOG 172intraperitoneal therapy arm. The dif-ference in progression-free survival is3.1 months and in overall survival 8.2months between the two studies infavour of the intraperitoneal route.There are no differences in two-yearsurvival rates, and only a 4–5% differ-ence in four-year survival rates.

The results of this study and the

previous phase III randomised tri-als2,3 suggest that a new standard ofcare in chemotherapy has beenreached in the primary chemothera-peutic management of small-volumeresidual advanced ovarian cancer;however, there remain a few hurdlesto widespread acceptance. Untilwell-controlled, prospective ran-domised trials demonstrate a survivaladvantage over standard chemo-therapy (intravenous carboplatin and

paclitaxel, instead of intravenous cis-platin and paclitaxel, the control armin GOG 172), intraperitoneal therapyneed not be routinely administered topatients with optimal stage III dis-ease. What practitioners should notdo is make modifications to the regi-men as published, as this might alsomodify the treatment’s efficacy.

Details of the references cited in this article can beaccessed at www.cancerworld.org/cancerworld

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SynopsisDK Armstrong, B Bundy, L Wenzel, et al. (2006) Intraperitoneal cisplatin and paclitaxel in ovarian cancer. N Engl J Med 354:34–43Background. Surgery and standard intravenous chemotherapy with a platinum-taxane combination induces completeremission in the majority of patients with newly diagnosed ovarian cancer. Most patients will eventually relapse and die fromtheir disease, however, despite escalation of the dose of intravenous chemotherapy. Although preclinical, clinical and phar-macokinetic data support the use of intraperitoneal therapy in ovarian cancer, this strategy has not been widely accepted.Objective. To explore whether the use of intraperitoneal chemotherapy with cisplatin and paclitaxel improves progres-sion-free and overall survival compared with intravenous cisplatin and paclitaxel in ovarian cancer.Design. In this randomised, phase III study conducted by the Gynecologic Oncology Group, patients with stage III epithe-lial ovarian or peritoneal carcinoma who had not undergone previous chemotherapy or radiation were studied. Inclusioncriteria were Gynecologic Oncology Group performance status 0–2 (where 0 was fully active and 4 completely disabled),residual mass following surgery limited to 1 cm in diameter, adequate hepatic and renal function, and normal blood counts.Intervention. Between March 1998 and January 2001, participants were randomly assigned to receive six cycles of treat-ment with intravenous paclitaxel (135 mg/m2) on day 1 followed by intravenous cisplatin (75 mg/m2) on day 2 (intravenoustherapy), or six cycles of intravenous paclitaxel (135 mg/m2) on day 1 followed by intraperitoneal cisplatin (100 mg/m2) onday 2 and intraperitoneal paclitaxel (60 mg/m2) on day 8 (intraperitoneal therapy).Outcome measures. Progression-free survival and overall survival were the primary endpoints, and toxicity and qualityof life were also assessed.Results. Median progression-free survival was 18.3 months in the intravenous therapy group and 23.8 months in theintraperitoneal therapy group (P=0.05). Median overall survival was 49.7 months in the intravenous therapy group and 65.6months in the intraperitoneal therapy group (P=0.03). Compared with the intravenous therapy group, fewer patients in theintraperitoneal therapy group received all six cycles of the assigned treatment (42% vs 83%), and more patients had severeor life-threatening pain, fatigue or haematologic, metabolic, gastrointestinal, or neurologic toxicity (P<0.001). Catheter-related complications comprised the main reason for discontinuation of intraperitoneal treatment. After adjustment forbaseline quality-of-life score, age and performance status, patients receiving intraperitoneal therapy had inferior quality oflife before cycle 4 (P<0.001) and 3-6 weeks after treatment compared with patients receiving intravenous therapy, but therewas no difference 1 year after treatment. Median duration of follow-up was 48.2 months in the intravenous therapy groupand 52.6 months in the intraperitoneal therapy group.Conclusion. Women with optimally debulked ovarian cancer receiving intraperitoneal therapy with cisplatin and pacli-taxel following intravenous therapy with paclitaxel had a substantial reduction in the risk of death compared with womenreceiving intravenous paclitaxel plus cisplatin. Acknowledgement: The synopsis was written by Petra Roberts, Associate Editor, Nature Clinical Practice

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Arecent randomised trial has found thatlow-income Chinese-speaking patients

in America were six-times more likely to bescreened for colorectal cancer when aclinic-based, multilingual health educatorprovided culturally appropriate counsellingand educational materials.

Until a few decades ago, colorectal cancerwas predominantly a Western disease affect-ing Caucasians. Studies of immigrants to theUS from low-incidence countries show thatcolorectal cancer incidence increases withinjust one generation. In Hawaii and Los Angeles,colorectal cancer incidence rates amongJapanese Americans are among the highest inthe world. Moreover, these patients are likely topresent with more advanced disease.

When detected at an early stage, colo-rectal cancer patients have an excellentprognosis, yet in America screening rates arelow, with just over 50% of the eligible pop-ulation having had a recent test.

Researchers investigated whether aclinic-based, multilingual interventioncould increase uptake of colorectal cancerscreening by faecal occult blood test amonglow-income, poorly integrated Chinese inAmerica. One group received standard careand the other group received counsellingfrom a trilingual and bicultural health edu-cator and were given multilingual videos,pamphlets and test instructions.


N E W S R O U N DS e l e c t e d p r e s s r e p o r t s c o m p i l e d b y t h e E S O C a n c e r M e d i a C e n t r e

Within the six months of the intervention,seven out of ten people (69.5 %) in the inter-vention arm had completed faecal occultblood test screening compared to fewer thanthree out of ten (27.6 %) in the control arm.

“Our results confirm the notable effec-tiveness of a multi-component, culturallyappropriate health education program topromote faecal occult blood test screeningwithin an ethnic minority group,” theauthors write. “The large effect of our inter-vention suggests the remarkable impact ofculturally appropriate health educationamong populations with limited healthinformation,” they conclude.■ Promoting culturally appropriate colorectal

cancer screening through a health educator: a

randomized controlled trial. S-P Tu, V Taylor,

Y Yasui, et al. Cancer 1 September, 107:959–966

said, “Not only can we now cure about 70%of children with high-risk medulloblastoma,we can also cure more than 80% of thosewith standard-risk disease, with a shorter,and therefore more convenient, chemother-apy approach”. Using the standard therapy,children with high-risk medulloblastomahave a 30–40% chance of surviving to fiveyears, and chemotherapy usually lasts forabout 12 months.

In their study, the researchers adjustedthe doses of radiotherapy given to 134 chil-dren with medulloblastoma, according tohow severe their disease was. Children wereclassified as being either at standard risk, ifthey had only small tumours remainingafter surgery and no evidence that the dis-ease had spread to the rest of the body, orat high risk if they had larger tumours, orevidence of spread to other organs. Childrenin the high-risk group were given a higherdose of radiotherapy to the neck and spinethan those in the standard-risk group.However both groups received an additionalboost of radiation to the actual site of thetumour, a shortened course of chemother-apy, and a reinfusion of bone-marrow stemcells after each cycle of chemotherapy.

The children's survival rate increased toaround 70%. Furthermore, Gajjar explains,“by reducing the amount of cisplatin fromeight doses to four doses, and the amountof vincristine from 32 doses to just eightdoses, we could alleviate a lot of the neuro-toxicity associated with the higher dose ofvincristine, without reducing survival.”

Gajjar predicts that these findingscould be the start of some excitingadvances in brain cancer. “Our research

Radiotherapy that is adapted to theseverity of disease and followed by a

shortened course of chemotherapy substan-tially improves the survival of children withmedulloblastoma, claim investigators in arecently published study.

Amar Gajjar, from St Jude's Children'sResearch Hospital in Memphis, Tennessee,

Culturally appropriatematerials increasecancer screening rates➜ Cancer

Tailoring treatmentto disease severity canimprove medulloblastomasurvival rates➜ Lancet Oncology


ImpactFactor

focused on understanding the biology ofmedulloblastoma,” he said. “We now needto develop a biological system of stagingthat works in conjunction with the currentclinical staging system to further refinetreatment for this disease.” Until then, headvises, “investigators should consideradopting a similar therapeutic strategy toours for their high-risk patients. Thisapproach should be feasible in most paedi-atric oncology units at academic medicalcentres, but meticulous staging and carefulattention to detail during radiotherapyplanning and treatment are essential toobtaining similar outcomes.”■ Risk-adapted craniospinal radiotherapy fol-

lowed by high-dose chemotherapy and stem-cell

rescue in children with newly diagnosed medul-

loblastoma (St Jude Medulloblastoma-96):

long-term results from a prospective, multicentre

trial. A Gajjar, M Chintagumpala, D Ashley, et al.

Lancet Oncology, published online 7 September,

doi:10.1016/S1470-2045(06)70867-1

Two separate studies have found thatphysical activity after patients are diag-

nosed with colorectal cancer may have aprotective effect. The studies found that therisk of colorectal cancer recurrence andoverall mortality decreased by around 55%among patients who did more physicalactivity, compared to those who were notphysically active.

Both studies saw an improved progno-sis with four to five 30-minute sessions ofbrisk walking a week, which is equal to 9metabolic-equivalent-task (MET) hours perweek. However, to see significant benefits,the length of walking time had to be dou-bled, or the intensity of the work-out had tobe significantly increased (to 18 MET hours

per week). Fitness levels before diagnosis didnot appear to affect mortality.

In previous studies, exercise has beenshown to have a preventive effect on breastcancer recurrence and mortality. Furtherresearch is needed to explore exercise andcancer and to examine the safety aspects ofexercise for patients more prone to heartdisease.■ Physical activity and survival after colo-

rectal cancer diagnosis. JA Meyerhardt,

EL Giovannucci, MD Holmes, et al; Impact of

physical activity on cancer recurrence and sur-

vival in patients with stage III colon cancer:

findings from CALGB 89803. JA Meyerhardt,

D Heseltine, D Niedzwiecki, et al; Cancer sur-

vival: time to get moving? [editorial]. W

Demark-Wahnefried. J Clin Oncol 1 August,

24:3527–34; 3535–41; 3517–18

Exercise may improvecolorectal cancer outcomes➜ Journal of Clinical Oncology

More than half of men with lower-riskprostate cancer received surgery or

radiation treatment when a wait-and-seeapproach of no therapy and active surveil-lance would have been a reasonable option,according to a new study from the Universityof Michigan Comprehensive Cancer Center.

Research has shown that older men withlower-risk prostate cancer who choose so-called watchful waiting are likely to die fromanother cause during the first 20 years aftertheir cancer diagnosis. Meanwhile, surgery orradiation to treat prostate cancer can lead tocomplications such as erectile dysfunction,urinary incontinence and bowel difficulties.

Researchers looked at 64,112 men diag-nosed with early-stage prostate cancer. Menwere divided into high-risk or low-risk cate-gories, based on characteristics of theirtumours. Among the 24,835 men with

Many lower-risk prostatecancer patients may beovertreated➜ JNCI

lower-risk cancers, 55% percent weretreated with initial surgery or radiation, sug-gesting that aggressive treatment is quitecommon even among men where an expec-tant approach is a viable option.

The researchers found that, among menwith lower-risk cancers, those under age 55are more likely to be treated with surgeryversus watchful waiting. In contrast, menaged 70–74 were more likely to be treatedwith radiation over watchful waiting. From2000 through 2002, more than 13,000 menwith lower-risk cancer received treatmentwith surgery or radiation within the firstseveral months after diagnosis.

“Based on data from this study, it isclear that the number of lower-risk patientswho receive initial aggressive therapy is nottrivial and we have to ask the questionwhether this is too much treatment forsome of these men,” says lead study authorDavid Miller. “We should continue to exploreour patients' preferences regarding the dif-ferent treatments for early-stage prostatecancer and better educate them about theentire spectrum of options, including theappropriateness of initial active surveillancein many lower-risk cases.”■ Incidence of initial local therapy among men

with lower-risk prostate cancer in the United

States. DC Miller, SB Gruber, BK Hollenbeck. J

Natl Cancer Inst 16 August, 98:1134–1141

Anew study provides evidence that obe-sity leads to more aggressive types of

ovarian cancer. Researchers found signifi-cant differences in types of epithelialovarian cancer depending on body massindex (BMI). In women with advanced dis-ease, a higher BMI was also associated withdecreasing survival rates.

Obesity leads to moreaggressive ovarian cancer➜ Cancer


ImpactFactor

Increasing evidence points to the impor-tance of obesity (BMI >30) and beingoverweight (BMI 25–30) in the develop-ment and outcome of several cancers,including cancers of the breast, uterusand bowel. The relationship between obesityand ovarian cancer is not as clearly under-stood.

Almost 1 in 60 women will developovarian cancer during their lifetime. Mostwill be diagnosed with advanced disease,and 70% will die within five years, making itone of the most lethal cancers.

There are several types of ovariancancer, but tumours that begin from surfacecells of the ovary (epithelial cells) are themost common.

Andrew Li of the Cedars-Sinai MedicalCenter and colleagues reviewed datarelating to 216 women with ovarian cancerto identify relationships between obesity,ovarian cancer, tumour biology and out-come.

Comparison of obese with ideal-weightwomen showed that 29% of obese womenand 10% of ideal-weight women hadlocalised disease. However, obesity was sig-nificantly associated both with differentcellular characteristics of the tumour andwith outcome in women with advanceddisease.

Obese women were more likely to havemucinous types of tumours and tended tohave non-serous types as well.

Though increasing BMI was not associ-ated with differences in treatment forwomen with advanced disease, a BMIgreater than 25 was associated with shorterdisease-free survival. Increasing BMI wasassociated almost linearly with increasingrisk of mortality.

“This study supports the hypothesisthat obesity impacts ovarian cancer mortal-ity by influencing tumour biology,”conclude the authors. ■ Effect of obesity on survival in epithelial ovar-

ian cancer. JC Pavelka, RS Brown, BY Karlan, et

al. Cancer, published online, 28 August, doi:

10.1002/cncr.22194

Arecently published study has shownthat genetic testing can help identify

aggressive, early-stage, non-small-cell lungcancer.

Currently patients with early non-small-cell lung cancer, identified as stage IA,are not given chemotherapy after surgery,as clinical trials have indicated no benefit.However, in a quarter of these patients, thedisease returns. Researchers from DukeUniversity Medical Center, America, lookedfor a way of identifying at-risk patients.

Almost 130 patients with the diseasetook part in the study. The researchersfound that they could accurately predictaggressive forms of lung cancer by scanningthe patients' genes.

Many doctors believe the current stag-ing system used to group lung cancerpatients is no longer an accurate indicatorof treatment. A genetic test now appears tobe a more accurate way of deciding ontreatment programmes for non-small-celllung cancer patients with stage IA disease.

Further clinical trials are due to takeplace in America and Canada involving12,000 cancer patients. ■ A genomic strategy to refine prognosis in early-

stage non-small-cell lung cancer. A Potti,

S Mukherjee, R Petersen, et al. New Engl J Med

10 August, 355:570-580

Genetic testing may predictif lung cancer will return➜New England Journal of Medicine

the follow-up of these families in thegenetics or oncology clinic. ■ Genotype-phenotype comparison of German

MLH1 and MSH2 mutation carriers clinically

affected with Lynch Syndrome: A report by the

German HNPCC consortium. T Goecke,

K Schulmann, C Engel, et al. J Clin Oncol

10 September, 24:4285–92

Important new information has emergedfrom the largest group of colorectal can-

cer families ever studied. The GermanHNPCC Consortium studied 574 familieswith a form of hereditary colorectal cancercalled Lynch Syndrome. Two genes, MLH1and MSH2, are implicated in this disease,and help to cause cancers by failing torepair defects in DNA which are cropping upall the time in normal wear and tear of thebody's cells. The cancers are not associatedwith polyps, thus the acronym HNPCC,which stands for hereditary non-polyposiscolorectal cancer.

The researchers focussed on tumourmaterial from 1,381 cancers identified in atotal of 988 patients from all over Germany.Definite or assumed mutations in the geneMLH1 were found in the tumours of 181and 254 patients, respectively, and in thegene MSH2 in 259 and 294 patients, respec-tively.

Patients with the MLH1 mutationswere younger when their first tumour wasdiagnosed and when the first colorectalcancer was picked up. Rectal cancer andcancer of the stomach were diagnosed veryfrequently in patients with either mutation.Several patients developed prostate cancers,all of whom had MSH2 mutations in theoriginal cancer specimen. The time betweenfirst and subsequent cancers was shorter inpatients whose cancer was on the left sideof the colon.

The authors recommend a redefinitionof treatment strategy for rectal cancers,regular surveillance of the stomach and ear-lier colonoscopy, especially in males,probably starting as early as 20 years of age.The link to prostate cancer in MSH2 muta-tion carriers needs to be borne in mind in

Gene linked to colorectalcancer also implicated in cancer of the prostate➜ Journal of Clinical Oncology

Focus


Jane, 42, looks like a frazzledhousewife. She doesn’t look likesomeone who does Iron Man

competitions – a 4-km (2-mile) swimfollowed by a 180-km (110-mile)bike ride and a full marathon. Somedays, she can’t take the laundrydownstairs. Mike, 45, remarks howpeople always think Jane is biggerthan she is. She’s 5ft 3in (1.6 m). In 1990, Jane was diagnosed withbreast cancer. In the decade that fol-lowed she had a mastectomy andunderwent two seemingly successfulrounds of chemotherapy and radio-therapy. Then, in 2000, she learnedthe cancer had spread to her bones.It was incurable and the prognosiswas that she had six months to live.In the past six years, Jane has had atotal of five courses of chemotherapyand has just finished a course of thebreast cancer drug Herceptin. Perching on the edge of the sofa,Jane says that she hasn’t been well.Her fatigue, just before departing forthe US, is worrying. Today she beginsa 4,214-mile [6,780-km] bike ridefrom San Francisco to New York.Even judged by her previous accom-plishments – four marathons, threetriathlons and a cycle ride from Rometo Leeds – it’s a challenge.

“It’s the scale that’s making menervous,” she says. “It’s what we’re

doing for nine weeks. It’s the sick feel-ing you get; it’s about having said I’ll doit. I feel I’m putting myself out theremaybe for people to watch me fail.”

The epic coast-to-coast journeyhas been 15 months in the planningand was dependent on Jane having abase level of fitness she could workfrom. “I’m not going into this thinkingit will be a breeze. I’m quite fright-ened. I don’t know the terrain. Someof the temperatures will be extreme –I mean, cycling in 45ºC [113ºF] isludicrous. It’s done on a wing and aprayer.”

On this trip, she will be joined byMike, Steven and daughter Rebecca,18 – her eldest daughter, Suzanne, isat university. “It doesn’t make iteasier having Mike and Steven there,but I don’t want to be away fromthem for that amount of time. We’llhave collective memories and sharedexperiences – though I can imaginegetting off my bike after a 70-mileday and Mike asking what we’rehaving for tea.”

The purpose of the trip is to raisemoney. Her gruelling endeavourshave so far made £1.25m (1.86meuro) for cancer charities, and she ishoping the cycle ride will take this to£2m. “We don’t seek publicity,” shesays. “Some glossy magazines want todo an ‘at home with’ feature. But have

you seen the state of this place?” Her dry self-deprecation is temperedwith flashes of steel. While herendurance achievements haveearned her the affection and respectof strangers, she has also been criti-cised for the amount of time shespends away from home. But, as sheexplains in her matter-of-fact way,the challenges give her goals to planfor that are not too painful to con-template falling short of. She wouldlike, she says, to see Rebecca throughuniversity, and would like to seeSteven into secondary school – butthat’s an emotional investment. Shenever thought she would live to seeSuzanne reach her 21st birthday. “If Ihad been really poorly and died, itwouldn’t have mattered to mebecause I’d be dead, but it wouldhave brought extra disappointment[to the family].”

Concerns have also been raisedabout the danger of setting standardsby which other people with cancerwill be judged. She is, she saysbluntly, the most reluctant of rolemodels: “Cancer sufferer – those twowords narrow my life. As if there’snothing else to my life. Cancer is abit of my life.

“I’m here six years after I expectedto be here. People tell me I’m selfish,that I should sit at home. It’s like your

What’s brave about having cancer?

On September 1st, exactly six years after being told she had only six months to live, Jane

Tomlinson completed a gruelling 6,780-km bike trek across America. Before setting out, she

talked about why she refuses to sit at home waiting to die.

➜ Riazat Butt


life has no validity unless it’s for some-one else’s memory. It’s insulting.When you’re poorly, you can’t do thehousework, you can’t do the cooking,you can’t do your job. To say that youshould sit in the corner so people canvisit you – it’s like living your ownwake. It makes me a bit angry.”

She laughs at the suggestion thatshe’s stroppy, but she also seemspleased by the notion. If she hasbecome a mascot for triumph in the

face of adversity through her charitywork, proving that chemotherapy andradiotherapy needn’t entirely ruinsomeone’s quality of life, that, shesays, is a by-product, not somethingshe set out to achieve.

“I am a mother, a sister, a daugh-ter, a wife. And I happen to be a can-cer sufferer. Why do I even have tobe a sufferer? And what’s brave abouthaving cancer? Living with cancerisn’t courageous. You make the choic-

es you can in difficult circumstances.It’s just having a shitty life. It’s shithaving cancer.”

And the treatment that hashelped to keep her alive is a double-edged sword: “I’ve had two rounds ofchemotherapy in two years and it’sbloody horrible. Nobody tells youthat. Nobody writes about how awfulyou feel after chemo. People see yourhair fall out, but that’s not the worstof it. I can’t feel the fingers in one

Focus

The challenges give her goals to plan for that are not

too painful to contemplate falling short of

Pedal power.Tomlinson is notgoing to let her life bedefined by the words‘cancer sufferer’


hand. I can’t feel the balls of my foot,which makes cycling difficult. Mymouth is sore. Your diarrhoea is sobad you’re pooing blood.”

Listening to Jane, you begin to seehow the rigours of cycling up to 90miles a day in blistering heat mightalmost be a welcome distraction;something else to worry about, a dif-ferent sort of pain. “You go through thetreatment and, six months later, you gothrough it again. You do it because youknow that’s the only way you’re goingto be around for your family.”

And then it’s time for her to getto hospital. The needles are waiting

This article was first published in the Guardian newspa-per on 29 June 2006, and is reproduced with permission

Focus

“Living with cancer isn’t courageous. You make

the choices you can in difficult circumstances”

THE CHALLENGE

Jane's Ride Across America would have been an extraordinary feat of endurance evenif she were perfectly healthy. It started at the Golden Gate Bridge in San Franciscoon the 30th June and ended in New York 62 days and 6,780 kilometres later, on 1stSeptember. Her route took her across the Sierra Nevada, the Rocky Mountains andthe Appalachians and included a 200-km stretch that never dipped below 2,100metres, rising to almost 3,500 metres as she crossed Monarch Pass. The Tour deFrance never rises above 2,000 metres.With minimal back-up and two companion cyclists, Jane travelled some of the mostdeserted stretches of road in America, relying on maps that sometimes let her down,and having on several occasions to fend off attacks by packs of wild dogs. You canread a blog of her journey at www.Janesappeal.com or www.thesun.co.uk/blogs.To donate to Jane's Appeal log on to http://Janesappeal.com or call +44 (0)8451200829

The last leg.Passing the White Houseen route to New York

cancer education & knowledge through people & facts · 2017-07-27 · education &...

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