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Summer 2003Issue 25

INSIDE...STATE REPORTS 2

MY JOURNEY 6

MINI-FIELDS OF WOMEN 7

FIELD OF WOMEN 2003 8

LETTERS TO THE EDITOR 11

DRAGONS ABREAST 12

RESOURCES 14

UPCOMING EVENTS 16

Breast CancerNetwork Australia’s

magazine

Our last issue carried anumber of articles bywomen who were long-term

survivors of breast cancer.In response, we received many letters

thanking us and applauding thosewomen for sharing their journeys.

Clearly, many improvements havehappened since those early days –treatments are kinder, moreinformation and support is available,women can be active participants intheir health care and, importantly, theconcept of breast cancer is not theunspeakable terror it was years ago.

As Barbara Dowling from Dorigo,NSW, has written: “All of the lettersprinted were inspiring to me, so theyshould also be for the many womengrappling for some degree of normalityamid the uncertainties of the disease.It is shocking that so many of thosewomen stated how young they were atthe time of ‘it’ happening and, ofcourse, how traumatic the treatmentwas way back then”.

As a result, we have received manynew stories from survivors – far toomany to include here. We have

decided, instead, to make themavailable to readers across Australiaand the world by including them onour website at www.bcna.org.au

These are great tales of courage,persistence and of overcomingmultiple challenges, and we stronglyrecommend a visit to the site.

More so than ever, our website isbecoming an important and populartool. During the month of October, wehad a staggering 73,250 hits on our site– an average daily total of 2362 visits.

Our latest authors include:Jill Orchard (Hobart, on behalf of hermother, Edna Smith); Lorraine Petzke(Bendigo); Ethel Hughes (NorthRockhampton); Virginia Linton-Smith(Melbourne); Janelle Pritchard(Capalaba, Queensland, telling usabout Anna – a 45-year survivor);Noel Sumner (Armadale, Vic.); Bev Artiss (Goulburn, NSW);Helene Harry (Lorne, Vic.);Joan Marsh (Armidale, NSW); GwenAshall (Emerald Beach, NSW); andRobyn Wegner (Hillbank, SA).

– Lyn SwinburneChief Executive Officer

The power of personal stories

Festive wishes to all ourmembers and supporters

for a happy holiday seasonand a healthy 2004

This year, the Field of Women visited Hobart in Tasmania. Amid the silhouettes are members of the OrganisingCommittee, Karen Forster, Pauline Watson and Joan Williams. To see more of the Hobart event, turn to pages8 and 9.

Breast Cancer NetworkAustralia’s national officewill close for the holiday

season at 5pm onFriday, December 19.

It will reopen onMonday, January 5.

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VICTORIA

Action on Breast Cancer WA(AOBC) held a successful Mini-

Field at the Perth Cultural Centre andthe WA State Library displayed BNCAinformation and support leaflets.

Oncology ward nurses from St. John ofGod Healthcare Subiaco wore BCNAcaps and sold merchandise duringOctober.

As always, Bakers Delight’s outlets andsupport staff were fabulous in theirenthusiasm and support, generatinginterest and awareness of BCNA.

AOBC continues to communicate withmajor hospitals about the concerns ofradiotherapy delays and one of ourmembers, Margaret, continues to makeinroads on the issue of the lack of CMIleaflets in prescription medication.

WA members active as speakersincluded Jennifer Pettigrove, Ann

Victorians have been involvedin a number of activities aimed

at increasing public awareness andeducation of breast cancer issues, andraising the profile of BCNA.

While the statistics tell us that mostsurvive and that survival rates areimproving, there are a significant numberwho know their lives will be cut short bybreast cancer. Many of these womenwere present at BreastCare Victoria’sforum for advanced breast cancer inMelbourne at the end of October.

WESTERN AUSTRALIA

State ReportsState Reports

These reports are extracts ofcomprehensive quarterly reportswritten by our state representatives.

The complete reports can be foundon our website, www.bcna.org.au

Our state representatives arealways happy to hear from readers,or to promote activities within thestate. Just give them a call!

NORTHERN TERRITORY

Our annual luncheon atGovernment House was well

attended and we were touched by thespeech given by Jeanette Anictomatis,the wife of the outgoing Administrator.She has been an excellent friend andsupporter of our cause.

Our Gala Banquet on October 24 wasattended by Senator Trish Crossin andDelia Lawrie MLA, as well as oursponsors. The evening was a success andeven rated a mention in Hansard!

The evening was a joint fundraiser forthe ANZ Clinical Trials Group andDragons Abreast NT and looks set tobecome a regular event on the NTcalendar.

October 26 saw a Darwin-style Mini-Field on the edge of the Arafura Sea. Itculminated in a remembrance flowerceremony at dusk.

Our Indigenous Breast CancerAwareness poster was launched onOctober 27 at the Desert Park in AliceSprings. It attracted Alice’s mayor,Fran Kilgariff, ATSIC CommissionerAlison Anderson, and the DeputyAdministrator of the NT, Pat Miller.Susan Tulley spoke on behalf of NTBreast Cancer Voice.

Contact: Susan Tulley, (08) 8927 3327or [email protected], or MichelleHanton, (08) 8941 8923 [email protected]

NEW SOUTH WALES

NSW women have again beenactive. On the metropolitan

scene, fellow State Representative,Megan James, has been the busiest,producing a son, Griffin!

There has been a huge amount ofactivity across NSW. Highlights include:• the launch of an electronic NSW

Directory of Breast Cancer and Services(see page 5);

• the launch of the Royal North ShoreHospital’s (RNSH) Cancer ResourcesCentre for patients and their families;

• the National Breast Cancer CentreBreakfast at the Westin Hotel;

• a BCAG (NSW) breakfast at OldGovernment House, Parramatta;

• the Illawarra Support Group’s

Celebration of Life luncheon forAustralia’s Breast Cancer Day;

• a presentation by oncologist Dr FranBoyle and Pam Bell to medicalstudents from the RNSH’s MedicalClinical School;

• a Mini-Field in Armidale, thanks tothe work of Vivienne Gregg and herteam , which worked closely withBakers Delight, and still found time topaddle as Dragons Abreast;

• Mini-Fields in Cooma, Merimbula andGoulburn which helped raise BCNA’sprofile in southern NSW;

• the work of Southern Area HealthService’s Breast Cancer AdvisoryGroup, which is made up of healthprofessionals and consumers and, toimprove rural breast cancer services;

• other Mini-Fields in Albury/Wodonga,Bega, Clarence Valley, Cootamundra,Forbes, Tweed/Brunswick and WaggaWagga; and

• the establishing of two new ENCOREprograms in Cooma and Goulburn.

Contact: Pam Bell, (02) 9955 9313 [email protected], or Megan James0418 454 953.

Two BCNA members spoke of theirexperiences and identified issuespertinent to those with advanced breastcancer. They were powerful talks with adistinct lack of ‘victim mentality’ and weare grateful for their contribution to thesuccess of the day, which was dedicatedto the memory of much-loved BCNAmember, Mary Bartlett.

Several Mini-Fields were held aroundthe State – Belgrave, Berwick, Brighton,Castlemaine, Geelong, Hamilton,Heidelberg, MLC (Kew), MelbourneCity, Munro, San Remo, SwinburneUniversity (Hawthorn), Tesselaar’s TulipFestival (the Dandenongs), Traralgonand Warrnambool. We were thrilled tohear positive comments from theconveners and those who attended theevents. Congratulations to all involved.

With the warmer weather approaching,many of us feel the need to get out andget fit. Remember that there is a dragonboat team that will begin training inearly December. Join us – it’s great fun!

For information about dragon boatingin Victoria, visit www.dragonsabreast.com.au or contact Pru Menzies on phone(03) 9570 4896 or [email protected]

All the best to everyone for a wonderfulsummer!

Contact: Gerda Evans, (03) 9805 2500or [email protected]

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THE ACT

We planned several major eventsaround Breast Cancer Week and

the 9th Australian Masters Games inCanberra, with fantastic teamwork fromDragons Abreast and support from BosomBuddies. Highlights included:• The Dragons Abreast Regatta for the

Pink Lady Shield donated by ACTpolitician, Brendan Smyth.

• A fundraising ride by the CanberraInternational Women’s MotorcycleAssociation which raised $1000.

• A Mini-Field at the National Libraryof Australia.

• A morning tea for BCNA at theCrowne Plaza on Australia’s BreastCancer Day, which was organised bythe venue’s marketing manager,Cheryl Parsons. This resulted in twocompanies, TransACT and ACTEW-AGL, each donating $500.

• The Bosom Buddies cocktail party,including Look at Me Now, a photoexhibition by Brigitte Seiger.

• The first showing of the WarriorWomen exhibition outside Victoria.

• An afternoon tea at Parliament Househosted by Senators Marise Payne andTrish Crossin, on behalf of theParliamentary Breast Cancer SupportGroup.

• The NBCC/BCNA Forum at theNational Library of Australia attracted250 people. Speakers included Prof.

TASMANIA

The past three months have beenconsumed with preparations for

the main Field of Women.Local members were kept busy giving

presentations to support groups, serviceclubs, hospital workers and schools aboutBCNA and the Field of Women.Especially busy were Joan Williams,Gerry Rockliff, Pauline Watson, KarenForster and Rosemary Kerrison.

October 26, the day of the Field ofWomen dawned bright and sunny, and arecord number of Tasmanians, for thistype of event, turned out.

A huge vote of thanks to the smallband of Tasmanian women who believedthat we, the smallest State, could stagethis event. If the Tasmanian public hadnot heard of the Field of Women or pinkladies beforehand, they have now!

The next State meeting will be atCampbell Town Fire Station onDecember 6 at 10am. Car pooling isavailable. Come along and see thephotos from the Field of Women!

Contact: Karen Forster, (03) 6273 4422or [email protected], or JoanWilliams, (03) 6424 5886 [email protected]

Christine Ewan, the CEO of theNational Breast Cancer Centre; LynSwinburne from BCNA; Val Leefrom Bosom Buddies; Melva Walter,a breast care nurse; Prof. DonMcKenzie from the University ofBritish Columbia; and Dr DavidHardman, a vascular surgeon.

These activities allowed networkingwith the Parliamentary Breast CancerSupport Group, the National CapitalAuthority, the Office of the Status ofWomen, Healthpact, local health-relatedagencies and support groups.

Thank you to everyone whocontributed to and/or attended theseevents.

Contact: Elspeth Humphries,[email protected] orAnna Wellings Booth, (02) 6247 8470or [email protected].

Congratulations and thanks toeveryone who organised Mini-

Fields across Queensland. They were heldin 15 places, including Brisbane atBulimba, Cleveland and the WesleyHospital at Toowong, and also in Ayr,Caboolture, Caloundra, Longreach,Toowoomba, Laidley, Esk, Boonah,Proserpine, Moranbah and Noosa.

Kathy Kuipers spoke about practicalsupport at the Queensland Cancer Fund’sYoung Women’s Network on October 29.

The Wesley More Choices GalaFashion Parade on October 30 was awonderful success and included a tributein memory of Leona Furstenburg.

Deb Hill, Queensland Central Zone’sproject officer for Strengthening Supporthas held several focus groups for womenwith advanced breast cancer. The resultsof these and the surveys will be includedin her report, due in mid-December.

As part of the project’s Northern andSouthern Zones, breast care nurses havebeen appointed to public hospitals inCairns, Townsville, Mackay, Gold Coastand Toowoomba, and at PrincessAlexandra Hospital.

People in these areas need to lobbyQueensland Health and their particulardistrict to ensure these positions aremade permanent. Contact us for moreinformation.

Our Queensland Committee to supportBCNA and follow up on State-basedissues, is up and running. Everyone iswelcome to attend our meetings, whichare held on a Saturday morning about

SOUTH AUSTRALIA

In Adelaide some 100 peopleattended the Mini-Field at

Henley Beach Square. The guest speakersincluded breast surgeon, James Kollias,along with Sandi Tillbrook, Deb Martinand Sally Russell.

Revell, Lorriane Fawkes and MariaWaters.

AOBC is again looking to fund nursesto attend the specialised breast carecourse next year. Please contact Maria ifyou would like to help sponsor a nurse.

The Cancer Council of WA held itsFourth State Cancer Conference inNovember.

Maria, on behalf of BCNA’sAdvanced Breast Cancer WorkingParty, presented a discussion paperadvocating for women with advancedbreast cancer.

AOBC has a new e-mail address –[email protected] – and mobilenumber – 0423 551 855. Its website is atwww.aobc.asn.au

We would like to wish all the readers ofThe Beacon a happy, safe and healthyChristmas and New Year.

Contact: Carol Bishop, (08) 9489 7312or [email protected], or MariaWaters, (08) 9344 7362 [email protected]

every six weeks at Gail Wiltshire’sTwelfth Night Theatre, Bowen Hillsfrom 10.30am to 12.30pm.

A big thanks to Dr Jane Turner, whodelivered an excellent talk at our lastmeeting about psychosocial guidelines forthe care of people with cancer.

We would love to see more of ourmember groups represented, includingthose from outside Brisbane. You are alsowelcome to join by e-mail or mail bycontacting either of us.

May the peace and joy of Christmas bewith you all.

Contact: Veronica Macaulay-Cross,(07) 3269 8083 or [email protected], or Lyn Moore, (07) 3822 5468or [email protected]

The State Reports continue on page 16

QUEENSLAND

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BCNA would liketo thank ...

You will have noticed I’m sure,when visiting your local BakersDelight bakery in October,

that ‘pink’ is definitely a colour thatcould be adopted all year round – itlooked fabulous!

Every bakery (650+) aroundAustralia was decked out with pinkpromotional material, includingposters, flyers, balloons, silhouettes,aprons and even pink 100s and 1000sto coincide with Bakers Delight’s blockloaf promotion.

Fifty cents from every $2.60 loaf soldon October 25 was generously donatedto Breast Cancer Network Australia.

This was supported by a donation tinon every counter, which proved to bevery successful – many bakeries fillingtheir tins in the first week.

Head, leg, arm and eyebrow shaving,sausage sizzles, pink hairdos andBCNA merchandise selling were just

Bakers Delight in the pink

a few of the extra efforts put in by ourspecial friends at Bakers Delight.

What will they think up next year?We would like to thank Bakers

Delight, the franchisees, the staff, theircustomers and all the BCNA memberswho supported this promotion.

You have raised $120,000 to help usin our work – a terrific effort!

The pink team atBakers DelightBankstown (NSW)raised more than $1700and sold in excess of$3800 worth of BCNAmerchandise – what aneffort!

Rhiannon Smith fromBakers DelightCanterbury (Vic.), freshfrom her $700+ headshave!

• Linda Elliott and Bev Burleyfor raising $5500 with the KidsSpace event in Melbourne.

• Lee Naylor for organising theFit and Healthy Breakfasts inMelbourne, Sydney andBrisbane.

• Narelle (Noddy) Groundstromand B’r’est Friends Bundabergfor organising the Bums on Bikesfundraiser which raised $2862.

• Tesselaar Tulip Farm fordonating $2000 from its LadiesDay at the tulip festival inMelbourne’s Dandenongs.

• Delegates attending theFinancial Services PartnersChallenge Seminar inChristchurch, New Zealand, whocollected almost $20,000 indonations after Raelene Boyleaddressed the group.

• Pacific Brands for distributing50 merchandise boxes and 2000badges.

• PBS Services for distributing18 merchandise boxes.

• Mercedes Waratah Press forprinting The Beacon.

• KW Doggett for assistingwith the cost of the paper forThe Beacon.

• Marsh Insurance Brokers for itsdonation of $1000.

• On-going support from Le Reve,Norwich and AIA Insurance.

• Prue Troedel, Harriet Moore,Chris Collingwood, PennySennitt and Susie Vaughan fororganising another successfulPink Ladies garden tour this yeararound Victoria’s MorningtonPeninsula and raising almost$4000.

Seen at the National BreastCancer Foundation’sannual research update inSydney were two BCNAmother/daughter teams.Front: Judith andMaryanne Maher.Back: AmandaMaltabarrow and MargaretWilliams.Sincere thanks to all our BCNA

state reps, regional reps, consumerreps and volunteers who have helpedus throughout the year. We rely onyour support and appreciate yourwillingness to get involved.

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We are extremely excited toannounce that Susan Love andStella Kyriakides will be our twointernational speakers at the 2ndNational Breast Cancer Conferencefor Women, to be held in Melbourneon August 27 to 29.

Dr Susan Love will need nointroduction to most of our readers.She is the author of Dr Susan Love’sBreast Book, considered by manypeople as ‘the bible’ of breast disease.

Despite numerous offers in thepast, Susan has never visitedAustralia, but she is looking forwardto speaking at our conference.

I have had the privilege of hearingSusan speak on a number of

Fantastic international speakers announced for 2004 conference

occasions, and she is an enthralling,informative and captivating speaker.

Stella Kyriakides lives in Cyprus andis the Vice-President of Europa Donna,the breast cancer advocacy coalitionrepresenting women with breast canceracross 29 countries in Europe.

Europa Donna is BCNA’s sister groupin that part of the world.

We have spoken to many women

START PLANNING NOW

February 16 – call for abstracts on our website

March 12 – deadline for abstractsApril 1 – registrations openAugust 27-29 – conference

In the last issue of The Beacon,we mentioned that BCNAwas working with writers from

the TV series, Neighbours, seen onNetwork Ten.

Some of you may have seen episodesin recent months that have followedthe breast cancer journey of one of thecentral characters, Steph.

We felt it was important that thewriters understood the issues faced byyoung women with a breast cancerdiagnosis. We also saw this as anopportunity to raise these issues,via the storyline, with the viewingaudience, not only in Australia, butacross the world.

Like many young women who find abreast change, Steph is at first told bythe doctor not to worry; it is highlyunlikely to be breast cancer. She doesnot, however, accept this andcontinues to be proactive with herconcerns until a definitive diagnosis ismade. She then falls apart and has noway of knowing how to best managethe situation.

Again, not atypically for women withbreast cancer, Steph decides to keepher diagnosis a secret, because she is

Neighbours deals with breast cancer issues

worried about the ramifications forthose closest to her. She doesn’t knowhow to tell them and she doesn’t wantto see them suffer.

Her family is confused about what ishappening, but finally all is revealedand Steph receives the support andlove she needs from her partner, familyand friends.

The program then follows Stephthorough her treatment phase. Thereare moments of challenge, especially inthe relationship with her partner, Max,but also times of humour.

Importantly, she is not portrayed as avictim, but someone getting on withher life.

An episode will be screened onDecember 15, that sees Steph and Maxwalk among the silhouettes in the Fieldof Women.

She will read the messages of loveand encouragement written in hername and, along with the audience,will recognise and appreciate theimportance of having the full supportof family and friends.

– Lyn Swinburne

already planning their trips toMelbourne for August.

There is plenty of time for you toorganise to travel together and toshare accommodation. Some womenare planning fundraising events intheir communities to help cover thecosts of getting to the conference.

Registration has been set at $100, tohelp cover the cost of lunches andmorning and afternoon teas over thethree days.

An exciting and informativeprogram is being planned with thesocial highlight to be a hugecelebration party one evening –no stuffy conference dinner for us!

– Lyn Swinburne

LynSwinburne‘on location’withNeighbourscastmembers

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Win for DeniceIn a landmark decision, a Federal

Magistrate has found that QBEInsurance unlawfully discriminatedagainst Denice Bassanelli, a BCNAmember from South Australia, and hasawarded her damages and costs.

QBE refused to grant Denice travelinsurance for travel-related events suchas lost luggage and medical expensesnot associated with her metastaticbreast cancer. She had not sought coverfor medical expenses associated withher pre-existing condition.

She is keen to thank all the peoplewho have supported her and her familythrough the process to date.

QBE has appealed the decision, withthe appeal to be heard in January 2004.We will keep readers of The Beaconposted on progress in Denice’s case.

Denice Bassanelli celebrates her win with her husband, Mike, and children, William and Edward (Photographcourtesy of The Advertsiser, Adelaide).

My Journey

I t might have surprisedMonteverdi to know that themusic of one of his great operas,

L’Incoronazione di Poppea, would belearnt some day in a Sydney hospitalbed by a one-breasted woman shortlyafter surgery.

I was told I had breast cancer on mybirthday and that a mastectomy of theleft breast was essential.

The consulting surgeon assured methat he would not remove any chestmuscle. This was vitally importantinformation. I am a singer and flautist.Baroque music is my passion. I believeI was put on this planet to sing (theendorphin release you get from singingis unsurpassable in my experience).

Four days after the removal of the leftbreast, the all-important lymph nodestest results came back.

My relief that they were all clear faroutweighed the surgeon’s news that theright breast would also have to beremoved.

Singing the song of life

Harmony is important to a baroquemusician, so I was pleased to discoverthat my bust-line would not be out ofbalance!

Anyway, I had music to learn for ournext concert and was not going to usethe time in hospital unprofitably.

I was released from hospital on aFriday, 3½ weeks after my diagnosis –flat-chested, and anticipating monthsof chemotherapy – but with my brain

and spirit surging to perform theMonteverdi.

I was back at school teaching musicon the next Monday.

Not only flat-chested, but also bald, Isang and played in the next Cantate eStrumenti baroque concert fourmonths after leaving hospital.

The baroque music ensemble,Cantate e Strumenti, was formed in1994 by my colleague, Tony Eyers,and myself, to fulfil a passionate needto perform the baroque repertoire thatwe both love.

At present the ensemble includessoprano voice, baroque flute, recorder,two violins, cello and harpsichord.

Having breast cancer has made me amore confident, assertive person.There is so much music still to performand no time to waste on negativeenergy.

Music, my spirit nurturer, helped methrough my medical ordeal and keepsmy positive energy soaring.

Amanda Louise Muir, Sydney, NSW

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Our 56 Mini-Fields of Womenproved to be an outstandingsuccess!

The idea of organising a Mini-Fieldcan be daunting, but our convenors(see the list on page 10) chose toaccept the challenge.

They all excelled themselves andmust be congratulated for theirpassion, dedication and creativity. Wehave been delighted with the outcome.

One convenor was so excited shedidn’t sleep for days!

An added bonus for the convenorswas the offer of assistance from TelstraFriends. Many of the Mini-Fields madeuse of this generous offer of assistance.

We also encouraged our convenors toask their local libraries to promote ourlibrary list of ‘must have’ books. Theirpersuasive powers resulted in manylibrary displays and the promise thatthese books would be ordered in assoon as possible.

All the Mini-Fields silhouettessponsored will have a permanent placein the major Field of Women.

Mini-Fields bloom across AustraliaThe ladies in Caloundra were so

skilled at obtaining silhouettesponsorships that they had moresponsorships than the 100 silhouettesallocated to their Mini-Field!

The enthusiasm has been so greatthis year that many convenors havealready signed up for next year.

If your group would like to hold aMini-Field in 2004, phone BCNA on1800 500 258 to register your interest.

Space restrictions will not allow us toinclude more coverage of the Mini-Fields, so we recommend readers ofThe Beacon visit the BCNA websiteat www.bcna.org.au for a tour of ourMini-Fields around the country. Youwill be astounded and proud of what somany of our member groups andwomen have achieved.

Congratulations to all our Mini-Fieldconvenors and their organisingcommittees!

More Mini-Field images on page 10.

Geraldton, Western Australia

In the Cootamundra Mini-Field: Sharon Collingridge (convenor), Ev Dowell,Gloria Schultz and Cathy Hourne.

Guest speaker, Fran Jaeger, in the Albury-WodongaMini-Field.

Women from the Burdeken Breast Cancer Support Group in Queensland held aworking bee to get ready for their Mini-Field in Ayr.

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Field ofWomen 2003– a sleepinggiant stirsin Hobart

On October 26 the sunshone down on theHobart Cenotaph

and bathed the silhouettes in agolden glow.

We were truly blessed to have suchfine weather as the week leading upto the Field of Women was grey andgloomy.

It was as though the weather sensedthe importance of the occasion.

Following the morning’s breastcancer forum, people gathered inFranklin Square, a popular Hobartmeeting place, to commence theSilent Walk along Macquarie Street tothe Cenotaph. Franklin Square wasawash with pink.

Raelene Boyle, Jocelyn Newman,Dr Patricia Edgar and otherprominent women lead the walk tothe Field of Women.

Many people from all aroundAustralia also made the pilgrimage toTasmania to show their support forthose affected by breast cancer.

Nothing can prepare you for thetingling feeling that starts at your toesand moves all the way through yourbody to your finger tips when you seethe Field of Women for the first time.She was like a sleeping giant waitingpatiently for the Silent Walkparticipants to arrive.

The desire to participate was sostrong for the ladies northern ofTasmania that they arranged for a busto pick them up at 5.30am! Then therewas Jean, who travelled solo from theSunshine Coast pulling a caravanbehind her.

At the launch Will Hodgman,MHA, was the Master of Ceremonies

and he talked about how he had losthis mother to breast cancer. LynSwinburne spoke about thesignificance of the Field and TaniaMonty, a young breast cancer survivor,inspired the crowd with her own story.

After the launch, people spent somequiet time wandering among thesilhouettes, reading the messages andplanting new ones.

It was a chance to reflect on those wehave lost, as well as to celebrate thelives of those who have survived breastcancer.

– Michelle Rule2003 Project Manager

Leaders in the2003 SilentWalk whichtravelled fromFranklinSquare to theHobartCenotaph.

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Sharon Gibson (right) and her daughter, in the Field of Women. BCNA members from Victoria travelled to Hobart for the Field of Women.

An event as complex as the Field ofWomen would not be possible withoutthe support of many people andorganisations.

We especially thank:• Our major sponsors

Bakers Delight;Australia Post; andNew Idea.

• Karen Forster, who was a superbproject officer, and her family.

Mayors from around Tasmania planted silhouettes torepresent women affected by breast cancer in theirmunicipality.

There was no doubt about where Regina Svenson was heading! Totally decked out in pink (including a pinkmotor scooter), Regina joined the Silent Walk in Hobart.

Thank-you for helping make the Field of Women a reality• Hobart’s Organising Committee –

Rosemary Kerrison (Chair),Will Hodgman MHA, Chris VanBuuren, Margaret O’Rourke,Joan Williams, Shirley Catchpole,Pauline Watson, Cris Fitzpatrickand Tracy McGlone.

• Local sponsors and supporters.• All the volunteers, who completed

a variety of tasks, including plantingsilhouettes, data entry, selling

merchandise, marshalling,assisting at the forum andsurveying the field.

• Naughton Transport Services fortransporting the silhouettes fromMelbourne again this year.

• Precision Forme Cutting forhelping produce extra silhouettes.

• Multiwall for storing ourMini-Field of Women kitsthroughout the year.

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Visit BCNA’s websiteat www.bcna.org.au formore images from the

2003 Mini-Fields

Traralgon, Victoria

ACTCanberra – Claire Dennis

NORTHERN TERRITORY

Darwin – Michelle Hanton

NSWAlbury/Wodonga – Judy HarrisonArmidale – Vivienne GreggClarence Valley – Margaret O’SheaCooma – Jane RedmondCootamundra – Sharon CollingridgeForbes – Christene GortonGoulburn – Pat RedmanMerimbula – Jo Anne ReidTweed/Brunswick – Lyn LawsWagga Wagga – Janice Jones

QUEENSLAND

Ayr – Shirley GilmoreBulimba – Lyn MooreCaboolture – Jurina DemaineCaloundra – Judy IrvineCleveland – Wendy KingEsk, Boonah, Laidley – Lyn FieldLongreach – Heather MortonMoranbah – Annette HenryNoosa – Dawn Reed

Berri, SA, Mini-Field convenor, Millie Laccos.

Caloundra, Queensland

Proserpine – Kathy SchurmannToowoomba – Imelda O’LoughlinToowong – Barbara QuinnWoodridge – Lynda Pallen

SOUTH AUSTRALIA

Berri – Millie LaccosCeduna – Christine AndersonHenley Beach – Sally RussellMt Gambier – Janet WilliamsPort Lincoln – Maxine Barker

Robe, Kingston SE – Merilyn HarringtonYorketown – Dianne Reade

TASMANIA

Devonport – Robyn GlenLaunceston – Pauline WatsonWynyard – Anne Cameron

VICTORIA

Belgrave – Robyn HandisidesBerwick – Kathleen IrvineBrighton – Pamela WilliamsCastlemaine – Cheryl BallGeelong – Anna DowdHeidelberg – Maxine CorfieldHawthorn – Eliza SwinburneMLC Kew – Sue HeffernanMornington – Helen SpicerMunro – Glenys RuffRingwood – Mandy CavanahSan Remo – Annie BaileyTraralgon – Enid PhilipVictorian State Library – Gerda EvansWarrnambool – Marilyn Spikin

WESTERN AUSTRALIA

Geraldton – Kaye StreetPerth – Maria Waters

Congratulations to our 2003 Mini-Field convenors

National Library, Canberra

Bernadette Prescott and Mary Burke,Toowoomba, Queensland

Caboolture, QueenslandFront row (LtoR): Auriel Ainsworthy,Carolyn Male (MP), Peter Meij, JurinaDemaine (convenor).Back row (LtoR): Dianne Stoddart, LornaJones, Sue Parker, Adrienne Mackinlay

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Letters to the EditorThanks for the latest magazine and

The Beacon. The stories of people whoare many years down the path of lifeand doing well makes great copy.One small request? BreaCan gets lotsof mentions in The Beacon, butnowhere in recent issues is there anyinformation as to where BreaCan islocated. That would be a usefuladdition in future issues, whenever it ismentioned, especially for new readers.

– Linda King, Victoria

Editor: Thanks for pointing this out.BreaCan is a drop-in resource centre forpeople with breast cancer, their family andfriends. Its address and contact details are:First Floor, 123 Lonsdale Street,Melbourne, Victoria 3000. Phone(03) 9664 9333, fax (03) 9663 7955,e-mail [email protected] or webwww.whv.org.au/breacan.htm

Just recently I had a problem withmy right breast and had to have amammogram and ultrasound on thatbreast, for which I was charged $194.

Even though I am in a private fundit was not covered by it, only byMedicare. My question is, ‘If you arehaving those tests done on only onebreast shouldn’t you be paying less?’.

This topic has often been discussed atour group support meetings, but I don’tthink the solution was ever found.

It would be interesting to getcomments from experts on this.

– Yasna Hale, Mangerton, NSW

I saw an article about MaryMacheras-Magias and her interest insetting up a website.

I was diagnosed with early breastcancer at the age of 32 years. I waspregnant at the time with my secondchild. It was a distressing time for me,my family and my little boy. I had amastectomy, but could not have moretreatment due to the pregnancy.

Six months after my little girl wasborn, I was determined to breast feed(I had successfully breast fed my sonfor eight months).

After some traumatic weeks with avery sore nipple, we managed to createa positive breastfeeding experience.

She was exclusively breast fed for fivemonths when we began solids. Iweaned her from the breast at sixmonths so that I could have a breastreconstruction – the temporaryimplant was nearing its use-by date.

My little girl is my miracle baby andcertainly helped me through the wholeexperience. We just celebrated hersecond birthday, which I also consider

my anniversary. So far, all is well withmy other breast.

Good luck with your website.– Rose McCathie, ???

As a ‘remote’ survivor, I do enjoy TheBeacon. We in Coffs Harbour are luckyto have a breast nurse, and a goodsurgical team and oncology unit. Thereis no radiotherapy, but it is promised.

I am a 15-year survivor, my sister-in-law is a survivor and within the BCCS,in which I volunteered for 10 years,there was one 40-year survivor. I knowat least three women who are in the15-year range.

Yes, I do think it’s important to putthese facts forward. So many peopleare surprised that one is so far downthe line.

Having breast cancer changed myoutlook and nature (for the better)but, of course, it worries me from thepoint of view of the statistics for mythree daughters and daughter-in-law.

Keep up the great work – if I can helpin any way, I will.

It’s not what lies behind us or in front ofus but what lies within us that matters.

– Pat Armstrong, Coffs Harbour, NSW

Advice for those withyoung children

If you have a young baby ortoddler while receivingchemotherapy, ask about theirimmunisations. The Oral Sabinis a live culture and is passed out inthe child’s faeces. I was advised tohave my baby given the SalkInjection for polio. This is safer foryou as the culture is ‘dead’.

– Angela McDonald,Hobart, Tasmania

Meet our new staff members

National Programs Manager – Terri Smith.Terri replaces Gil Paulsen, who is expecting herfirst child in early January.

National Communications and MarketingManager – Kerrie Milburn-Clark. Kerrie replacesSue Watson, who has begun her own corporatetraining company.

12

Doctors warn aboutthe accuracy ofthermography

Women have been warned not tofall for claims that breast cancerscan be detected early by a techniqueknown as thermography.

The WA Health Department hasurged women not to waste theirmoney on the scans, which couldmiss tumours and falsely reassurewomen that they are not at risk ofbreast cancer.

BreastScreen WA’s medicaldirector, Dr Liz Wylie, has said thatmany women were attracted tothermography because it did notuse radiation or require compressionof the breast.

“But it is such a poor detector ofbreast cancer and there is a verysignificant risk that women will befalsely reassured that they don’t havecancer,” she said.

Liz said proponents of thermographyclaimed it produced ‘heat pictures’of the breast and used the rationalethat skin overlying a malignantbreast lesion would be warmer thanother areas.

However, studies have shown atumour has to be several centimetresin diameter before it can be detectedby thermography and fewer than50% of breast cancers detected bymammography screening had anabnormal thermogram.

Dragons Abreast Report

The 9th Australian MastersGames in Canberra will liveforever in the memories of

Dragons Abreast Australia!It was a ‘once in a lifetime’ – a special

experience that saw 165 pink paddlersgather in our nation’s capital; afabulous coming together of membersfrom across this huge country of oursto celebrate the 5th anniversary ofDragons Abreast.

Prof. Don McKenzie, the founder ofthe breast cancer survivor dragon boatmovement, was our guest of honour.Don kindly agreed to fly fromVancouver, Canada, to spend theweekend with us.

We managed to pack in a range ofexciting events including our annualgeneral meeting, an informal dinner,afternoon tea at Parliament House,the Breast Cancer Forum, the WarriorWomen Exhibition and ourCelebration of Life 5th anniversarydinner in the magical outdoor settingof the Botanical Gardens. Of course,there were also the actual dragon boatraces!

Our special friend and supporter,Madeleine Luck, travelled toCanberra to cheer us on and wereceived the most wonderful thrillwhen she generously donated $20,000to Dragons Abreast Australia.

The beautiful, inaugural BreastCancer Network Australia trophy was

hotly contested and won by acomposite team made up of paddlersfrom Queensland, the NorthernTerritory, Tasmania and Canada. Thistrophy will do the rounds of the Statesconcerned.

We’ve come a long way in five yearsand it is all thanks to the wonderfulparticipants that make up our teams!

Special thanks and credit must go tothe ACT team for its generoushospitality and tireless work on ourbehalf.

A full report and photos are availableon the website – www.dragonsabreast.com.auMichelle Hanton, national co-ordinator,Dragons Abreast Australia, phone(08) 8941 8923 or [email protected]

1. Throw out non-essential numbers.That includes age, weight andheight. Let the doctors worryabout them. That is why you paythem.

2. Keep only cheerful friends. Thegrouches pull you down.

3. Keep learning. Learn more aboutthe computer, crafts, gardening,whatever. Never let the brainbecome idle.

4. Enjoy the simple things.5. Laugh often, long and loud. Laugh

until you gasp for breath.6. Tears happen. Endure, grieve, and

move on. The only person who iswith us our entire life is ourselves.Be ALIVE while you are alive.

7. Surround yourself with what youlove, whether it’s family, pets,keepsakes, music, plants, hobbies,whatever. Your home is your refuge.

8. Cherish your health. If it is good,preserve it. If it is unstable,improve it. If it is beyond whatyou can improve, get help.

9. Don’t take guilt trips. Take a tripto the shopping centre, eveninterstate or to a foreign countrybut NOT to where the guilt is.

10. Tell the people you love thatyou love them at everyopportunity.

How to stay young – 10 tips from the Internet

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13

The Guardian Pharmacies Pink LadiesGolf Classic 2003 organised byHarriet Moore and Prue Troedelattracted 60 women from 14 clubs –and raised $10,800 for BCNA!

The women played on four courseson Queensland’s Sunshine Coast inAugust: Twin Waters, Pelican Water,Hyatt Regency Coolum and NoosaSprings.

Pink golfers – the talk of the Sunshine Coast!The overall winner was Anna

Spiden from the Peninsula CountryGolf Club in Victoria.

At the welcome dinner, the womenwere delighted to have BCNA’sRaelene Boyle address the group.

Next year’s tournament will be atSanctuary Cove from August 22 to27. If you are interested, phone1800 500 258.

The Cochrane Collaboration isan international networkformed in response to the

need among clinicians and consumersfor information that will help themmake well-informed decisions abouthealth care.

Many groups around the world areinvolved in breast cancer research, butthe findings are not always beenreadily accessible to the people whoneed to know the results: the patientsand their doctors.

The Cochrane Breast Cancer Group(CBCG), at the University of Sydney,searches for research evidence,formally evaluates it for quality andpublishes relevant systematic reviewsin the Cochrane Library.

The group thereby aims to providethe best source of accurate andup-to-date information about earlydetection, treatments in advanced

breast cancer, and psychosocialinterventions and outcomes.

The CBCG is looking for Sydney-based volunteers to contribute to thehand searching of journals at theUniversity of Sydney.

The object of hand searching is to siftthrough selected journals not indexedto major biomedical databases for allrandomised controlled trials.

Articles relevant to breast cancer areincluded on the specialised register ofbreast cancer trials and are availablefor use in reviews.

Hand searching can be done at a timesuitable to the individual.

A short training session andhandbook are available, and on-goingsupport is provided.Contact: Nicole Davis on phone (02) 95625081 or [email protected], orSharon Parker on phone (02) 9562 5006 [email protected]

Call for hand searchers –Cochrane Breast Cancer Group

Live as if you wereto die tomorrow.

Learn as if you wereto live for ever.

– Mahatma Ghandi

The Plaza Ballroom at Melbourne’sRegent Theatre was the fairytalevenue for the 2003 Glitter CharityBall.

It was a magical evening full ofglamour and excitement. ThePremier of Victoria, Steve Bracks,and his wife, Terry Bracks, who is aBCNA Board member, were theguests of honour, with KevinHarrington (Neighbours, SeaChangeand The Dish) as MC.

The incredible figure of $68,500was raised to help fund the develop-ment and distribution of the MyJourney kit.

A huge thank you must go to LeeBradford and her Glitter BallOrganising Committee for takingtime out of their busy schedules toorganise this event.

2003 Glitter CharityBall a success

Some members of the Glitter Ball Committee.

14

Resources

It was early April 1990, whenJudy Costello asked her husband,Simon, a paediatrician, to feel the

lump she has discovered under herright arm.

Two months later, and two weeksafter her mastectomy, Judy made thefirst entry into a journal that wouldcontinue sporadically until her deathin March 2002.

Hey Jude is a compilation of Judy’sjournal entries over these years. It alsocontains contributions from Simon,Jude’s three children – Josh, Kris andEvie (five, four and two years of age in1990) – and Jude’s sister, Tracy.

This is not one of those ‘feel good’stories with a happy ending. In fact,the book highlights the fact that afamily with a member suffering breastcancer, is usually a family facing amyriad of daily challenges and pain.

This is not a Brady Bunch story; morea gut-wrenchingly honest snapshot of afamily in crisis. Its members wrestlewith their own issues and try to makesense of their situation and how theymight get through.

We come to feel close to Judythrough her writings and wish wecould offer her some comfort and amiracle solution to her situation – sheis so determined to live!

Like many women faced withadvanced disease, she wrestles withfinding the best ways to control hersituation – meditation, diet, love andpeace – against a backdrop of a familyin crisis.

The issues that Judy grappled withare not new issues for women withbreast cancer – sexuality, body image,intimacy, uncertainty for the future,the need to feel some level of control,a desperation to see her children behappy, the strain on relationships, etc– but somehow the brutal honesty ofthe writing makes them seem all themore poignant.

For me, who only met Judy a fewtimes in passing, it was painful to readthis book. My tears certainly flowed,especially reading the pieces written bythe children a year after Judy’s death.

While I admired Judy’s incrediblecourage and remarkabledetermination, I felt sad that a lifewhich held so much promise, asclearly shown in the book’s colourphotographs, was reduced to a dailybattle within herself and with thoseshe loved most.

Not for the first time, I felt greatanger and outrage against the disease

Hey Jude: A Family’s Journey with Cancer

itself, which in Judy’s case seemed tobe relentless in its onslaught.

In the wider picture, it raises for us allimportant issues including:• How can we best support husbands

and partners?• What services should be available

to adolescent children in crisis?• What systems can we create to help

young mothers in practical ways?Hey Jude, in the most powerful of

ways, offers readers an intimate view ofthe daily lives of a family trying tocome to terms with advanced breastcancer.

Those who read this amazing bookwill never forget Judy Costello, whichis the reason why Simon, the childrenand Judy’s friends have committed tohaving the book published.

– Lyn Swinburne

Hey Jude is available byphoning 1800 500 258.

The cost is $28, plus $5 postage.All proceeds go to BCNA.

15

One of the many dilemmasfacing women diagnosedwith breast cancer is

knowing whether the surgeon theyhave been referred to ‘knows his or herstuff’.

We are delighted to announce thatthe Royal Australasian College ofSurgeons (RACS) has, for the firsttime, posted a list of Full Members ofthe Breast Section of the college on itswebsite.

Until now, no listing of surgeons witha special interest in the breast cancerfield was publicly available. BCNA hasalways felt strongly that women shouldhave access to this sort of information.

The criteria for full membership of

the college are based on:• involvement in the RACS audit;

and• evidence of continuing medical

education in breast disease.Mind you, merely having their name

on the list does not mean that eachsurgeon comes highly recommended.What it does provide is some evidencethat each person has a commitment tothe breast cancer field and this shouldprovide some confidence to women intheir care.

BCNA congratulates the college fortaking this step after so many years.

The list can be viewed atwww.surgeons.org/wedo/groups/sbs_members.html

List of breast surgeonsavailable on the web

Bookings for OtisFoundation retreat

The Otis Foundation retreat nearBendigo has now had around 50guests, all of who have enjoyed thepeace and the bush surroundings. Thisis available, free of charge, to anyonewho has experienced breast cancer.

To book, phone Liz Martin, unitsmanager, on (03) 5439 3220, [email protected] or visitwww.otisfoundation.org.au

NSW directory on-lineThe NSW Directory of Breast Cancer

Treatment and Services developed bythe Breast Cancer Action Group NSWand the NSW Breast Cancer Instituteis now on-line at http://www.e-strategy.net.au/bci/directory/default.asp

The on-line directory includes alisting of more than 170 breast cancerspecialists and additional resources forwomen in NSW.

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Reducing lymphoedema riskIn this issue of The Beacon you’ll

find our latest BCNA brochure,Reducing your risk of lymphoedema.

As most of you know, lymphoedema(swelling) of the arm can occur anytime after breast cancer surgery; ornever at all.

Lymphoedema is treatable, but onceit develops, it’s a problem that needslife-long management. We hope thisbrochure will help women to prevent

lymphoedema from occurring.We’d like to thank the RACV

Foundation for assistance withprinting costs.

We intend to make these brochuresavailable in bulk to breast care nursesat the National Breast Care Nurses’Conference in Brisbane in March2004.

Please call 1800 500 258 to orderadditional copies.

Women who have lost a breast tocancer may soon be able to grow a newone, using a stem cell technology beingdeveloped by Australian surgeons.

Also, breast tissue grown inside thebody might be used instead of siliconeimplants to boost breast size.

Surgeons at the Bernard O’BrienInstitute of Microsurgery, St Vincent’sHospital, Melbourne, have produced apig’s breast by growing fat and muscletissue in the animal.

Until now, tissues have been grown

in a petri dish, but the new technologyensures that the organ has a bloodsupply, necessary for transplantation.

This could lead to organs beinggrown from tissues in the body,Professor Wayne Morrison told theInternational Confederation of Plastic,Reconstructive and Aesthetic Surgeryheld in Sydney in August.

“The benefits of growing tissueswithin the body from our own cellsmeans that there is much less chanceof rejection,” he said.

Research aims to grow breast implants

In October, in conjunction withour Mini-Fields, we launched ourLibrary Resources Project.

We want to make sure that everylibrary across Australia has on itsshelves, a number of key resourcesrecommended by BCNA members.

It was during the creation of theMy Journey kit that these keyresources were recognised as beingparticularly valuable for women andtheir families affected by breastcancer.

We have sent every communitylibrary a listing of the 10 ‘musthave’ books and tapes with apackage of information toencourage them to highlight theseresources within their communities.

The next issue of The Beacon willinclude the listing as an insert,which you might want to pass on toothers.

Library ResourcesProject

16

YOU’RE NOT YET ON OUR MAILING LIST?Phone (03) 9805 2500 or 1800 500 258 (free call), or fax (03) 9805 2599,e-mail [email protected] or fill in this coupon and send it to:Breast Cancer Network Australia, PO Box 4082, Auburn South, Vic 3122

Name: ...........................................................................................................

Address: ........................................................................................................

.................................................... State: ..................... Postcode: .................

Phone: ( ) ............................................ E-mail: .........................................

Have you had a diagnosis of breast cancer? ❑ Yes ❑ No

UPCOMING EVENTS

March 4-5: 6th National Breast Care Nurses’ Conference, Carlton Crest Hotel,Brisbane.

Contact: (07) 3854 1611 or www.breastcarenurses2004.com.

March 20: Lymphoedema Association of Victoria’s 2004 Public Seminar, RoyalWomen’s Hospital, Melbourne.

Contact: 1300 852 850.

March 27: Lymphoedema in the Cycle of Life - a public awareness day, HiltonHotel, Brisbane, hosted by the Lymphoedema Association of Queensland.

Contact: (07) 3269 1498 and leave details for a form to register your interest in attending.

August 27-29: 2nd National Breast Cancer Conference for Women,Melbourne Convention Centre.

Contact: BCNA 1800 500 258.

The Beacon is the magazine ofBreast Cancer Network Australia.Editor: Lyn Swinburne, free call1800 500 258, (03) 9805 2500or [email protected]: SubstitutionYour comments and items for thenext newsletter are welcome.Send them to PO Box 4082,Auburn South, Victoria 3122.

THE BEACON

Continued from page 3The event was hosted byLilliana Patane, with a poetry

reading by her daughter, Tina.Friends of the co-ordinating group –

Sean, Lee and Jordan – provided musicwhile people moved around reading thesilhouettes.

Mini-Fields were held at manylocations across the State, from Cedunain the far-west to Mt Gambier in thesouth-east.

The convenors’ partnerships withothers in their communities to ensureawareness of the impact of breast cancerand support for those living with thedisease have been inspiring.

One of the outstandingly Mini-Fieldswas led by Maxine Barker in PortLincoln, where Dragons Abreast PortLincoln is on its way to becoming anestablished group of enthusiasticpaddlers.

SOUTH AUSTRALIA

State Reports continued SeekingShelter

BCNA welcomes these new groupsunder its national umbrella:• Cohuna Breast Cancer Support

Group (Vic.)• Strathalbyn Breast Cancer Support

Group (SA)• Sisters After Stretch (Qld)• Maryborough Cancer Support

Group (Qld)We also welcome our sixth associate

member group:• Breast Cancer Foundation of WA

Inc.This brings our total to 108 member

groups and 6 associate membergroups.

The Beacon is printed withthe generous support of

Mercedes Waratah Press andK.W. Doggett Fine Paper.

Other wonderful SA Mini-Fields wereheld in Berri, Henley Beach, KingstonSE, Mt Gambier, Port Lincoln, Robe andYorketown.

To see photos from these Mini-Fields,visit the BCNA website atwww.bcan.org.au

Contact: Deb Martin, (08) 8241 1804 [email protected], or Sally Russell(08) 8223 7106 or [email protected]

Footnote: Our SA State Reps, SallyRussell and Deb Martin, have decided toretire from their roles.

Sally will be taking up a new andchallenging full-time working position in2004, while Deb is expecting her first childearly in the new year.

We thank them for their work as BCNAState Reps and wish them both the very bestfor the future.

We are excitedly awaiting theannouncement of the birth od Deb’s baby –our second State Rep baby within threemonths.

Keep your face to thesunshine and you willnever see the shadows

– Helen Keller

Download issue 25

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