1
Spring 2001Issue 16
Breast CancerNetwork Australia
newsletter
INSIDE...STATE ROUND-UP 2
ABREAST INTERNATIONAL 4
HAPPY BIRTHDAY RAELENE 5
ISSUES OF CONCERN 6
MY JOURNEY 8
NEW RESOURCES 10
UPCOMING EVENTS 11
The Beacon is printedwith the generous
support of PMP Print.
The Field of Women is theNetwork’s powerful annualdisplay of the impact of breast
cancer in Australia.It was the venue for the Network’s
launch in Canberra in 1998, where thesilhouettes were displayed on the lawnsin front of Parliament House.
Since then, the Field has been seen inMelbourne (1999) and Perth (2000). Itwill be seen in Brisbane as this newsletterreaches readers.
The Field says so much of what we needto tell people. That breast cancer:• affects so many women and their
families – 10,000 newly diagnosedeach year;
• takes an enormous toll – more than2500 women die each year; and
• hits real people, who are far morethan mere statistics.
The messages attached to thesilhouettes offer hope, encouragementand inspiration to those living withbreast cancer; while others pay tribute tothe women we have lost.
In October, the Field will appear again– in Victoria Square, Adelaide.
The Field will be in place from October20 to 22, with the official launch onSunday, October 21. Join the Field at10.30am for the launch at 11am. As partof the ceremony, a silent walk will takeplace through Victoria Square.
We hope that thousands of SouthAustralians will pay their own tributes byvisiting the Field in Adelaide and readingthe messages attached.
Many members have contacted theNetwork’s office keen to hold a miniField of Women in their local communityon October 21 or 22, to coincide withAustralia’s Breast Cancer Day.
We have produced guidelines for thisand will offer Network members aresources kit, including 100 pinksilhouettes, to help make this happen. Alisting of all the mini Field sites is onpage 3.
We are including a Field of Womensponsorship brochure with each copy ofThe Beacon. You, or someone in yourfamily, might want to record a messageon a silhouette, or you might pass it onto a friend.
The cost of a silhouette sponsorshipis $20. Once a message is recorded,it becomes a permanent part of theexhibition. Next year’s Field of Womenwill be seen in Sydney.
We are grateful to New Idea forsponsoring this year’s Field of Womenevents.
The Field spreads its reach
New Network logoSince the
Network wasestablishedin October1998, manypeople haveassociatedthe pinksilhouettefrom our Field of Women with theNetwork.
Following much discussion andmany suggestions from oursupporters, we have decided toadopt the pink silhouette as ourpermanent logo.
The silhouette will help highlightthe Network’s primary focus –the woman with breast cancer, herneeds and issues, rather than on thedisease itself.
Bakers Delight give even more help!Bakers Delight helps the Network in
so many ways. It gives us free, fullyequipped office space in Melbourne,and has raised money to help usimplement projects for Australiansaffected by breast cancer.
Now Bakers Delight has found a newway to lend a hand. On October 20,Bakers Delight will give the Network50¢ from every $2.30 block loaf sold inits stores around Australia.
Field of Women sponsorship brochureswill also be available in their stores in
the weeks before, as will posters to tellthe public about the event and theopportunity to dedicate a message.
Tell your friends and colleagues aboutthe Bakers Delight block loaf offer.
We would like to encourage you tobuy a block loaf and, while you’rethere, tell the Bakers Delight managerabout your Network connection.
It’d be great if you’d thank your localBakers Delight people for supportingthe Network so much. Their generosityshould be acknowledged!
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State round-up
THE ACT
SOUTH AUSTRALIA
These reports are extracts of morecomprehensive quarterly reportswritten by our state representatives.
The complete reports can be foundon our web site, www.bcna.org.au
Our state representatives are alwayshappy to hear from our readers or topromote activities within the state.Just give them a call!
There was some minor changingof the guard at the recent annual
general meeting of Action on BreastCancer, which well attended.
One of our members, Kris Spackman,attended the Consumer Participation inCancer Care Meeting held by a COSASteering Committee in Melbourne inJuly.
The Health Consumer Council of WArecently hosted a consumers’ advocacycourse. Several of our members attendedand found it interesting and informative.
The Western Australia ClinicalOncology Group has asked Action onBreast Cancer (AoBC) members theirviews regarding Herceptin. We want tojoin with them in lobbying the PBAC tomake this drug more affordable.
AoBC has been offered sponsorshipfrom Vianet, which has agreed todevelop our web page. We thank it for itssupport and hope our association will bea long and happy one. The site should beup and running shortly.
Having been absent fromAustralia for seven weeks, all
I can talk about is dragon boating (seearticle on page 4).
However, I must emphasise that eventhough dragon boating takes up a lot ofmy time, I am involved in many otheractivities on behalf of the Network, asindeed are fellow members.
Many of us are on local committees,including Breast Screen, Health CareConsumers ACT, Breast Cancer Treat-ment Group – ACT and South EasternNSW Region, as well as representingconsumers on national committees.
We are serious about representing youin State and Commonwealth arenas.
Contact: Anna Wellings Booth (02)6247 8470 or [email protected] Elspeth Humphries (02) 6239 6344
Preparations for the Field ofWomen on October 22-24 are
well underway, with the program in thecompetent hands of project manager,Cath Tonkin.
For information about the Field orto offer your help, phone Cath on(08) 8333 3964.
Action for Breast Cancer SA held aone-day workshop in Adelaide for theco-ordinators of their breast cancersupport groups on July 14.
Ten groups, including one for Greekwomen, and others in Port Lincoln andWhyalla are well established, but wehave identified a need for several more,particularly for Italian women in thenorth-eastern suburbs. Lyndal Outram,our newest member has offered toco-ordinate a group for young women.
SA has been introduced to the dragonsboat concept. We are working under theauspices of the Department ofRecreation and Sport, and with theassistance of Tim Monson, president ofthe Dragonboat Club SA. Phone me onthe number below for information.
The public Lymphodoema ScreeningProject moved to Port Augusta in June.This will further the work of ProfessorNeil Piller and Jenny Donovan fromFlinders Medical Centre in detectinglymphoedema in ‘at risk’ people beforethe problems can progress.
Contact: Carlene Butavicius (08) 82722895 or [email protected]
VICTORIA
WESTERN AUSTRALIA
Recent activities in Victoriahighlighted the variety of
interests and concerns of those affectedby breast cancer.
The Breast Cancer Action Group helda meeting to update and inform us aboutthe drug Herceptin and, with theNetwork, to formulate a policy fortreatments such as this – caught in thepolitics of pharmaceutical companies andthe public purse.
A Consumer Science and AdvocacyTraining Program has prepared 20women to join committees and reviewpanels.
The Warrior Women exhibition istouring country Victoria, so many morepeople will have the opportunity to seethe members’ artistic and creativetalents.
We will celebrate Australia’s BreastCancer Day with mini Fields of Womenin Melbourne and around the State.
NEW SOUTH WALES
Among the recent activitiesattended was the opening of the
Pam McLean Cancer CommunicationsCentre, performed by Professor MarieBashir, Governor of NSW.
The day’s convenor, TV personality,Julie McCrossin, gave DragonsAbreast ahuge mention, insisting that even theGovernor join in the round of applause.
On May 29, the importance ofconsumer participation in health carewas highlighted when I spoke at theUniversity of Technology, Sydney’sFaculty of Nursing, Midwifery andHealth Graduation and Prize GivingCeremony. The address focused on thetopic of consumerism in health care.
Dr Philip Clifton-Bligh gave aninformative talk about osteoporosis as aside effect of chemotherapy at the Maymeeting of Breast Cancer Action Group(BCAG).
For the record, BCAG (NSW) now hasthe honour of Vice-Regal Patronage,recognition of its support for breastcancer services.
Another active band is the IllawarraBreast Cancer Support Group. Followingthe advice of oncology nurse consultant,Gloria Swift, I got myself on the mailinglist for the group’s newsletter. Theiractivities are not only inspirational butsound like fun. Phone Robin Gregory on(02) 4296 4200 for information.
The NSW state representative contactfrom August 21 to October 16 will beRobyn Wicks on (02) 9843 3172.
Contact: Pam Bell (02) 9955 9313 [email protected]
Raelene Boyle’s 50th birthday and five-year breast cancer survival party was amost successful evening for Raelene andthe Network, something reflected in themedia coverage of the event.
Contact: Gerda Evans (03) 9805 2500 [email protected]
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TASMANIA
NORTHERN TERRITORY
Weather-wise, the NT is the bestplace in Australia at this time of
year. In the Top End we think it’s cold ifit gets below 20°C at night!
More news on the breast cancer nursefront – Stephanie Gaynor has beenappointed as Central Australia’s firstbreast care nurse. Phone her at theCancer Council on (08) 8927 4888.
On September 29, Senator TrishCrossin will host a public meeting forwomen who live in the Palmerston area– please phone Senator Crossin’s officeon (08) 8931 0830 for details.
Our new Administrator and hiswife have agreed to host a lunch atGovernment House in October,following last year’s successful luncheon.
Many activities have been plannedacross the NT for Australia’s BreastCancer Day – contact us for details.
If you are in Darwin, don’t forget thatthe Darwin Runners Club will beholding a gold coin donation runningevent on October 24 – all proceeds willgo to the NT Breast Cancer Voice (we’resure you can also walk this event).
Contact: Susan Tulley (08) 8927 3327or [email protected] orMichelle Hanton (08) 8941 8923 [email protected]
Several of our members attendedthe Tasmanian Cancer Summit in
May. Its purpose was to bring peopletogether from across the State to discussthe issues relating to the impact ofcancer in Tasmania.
Siobhan Harpur has started work onthe three-year project, StrengtheningSupport for BC, based on Making ADifference, and has been talking withgroups and individuals from urban andremote areas.
Pat Mathew spoke about the Network,lymphoedema and the role of consumeradvocates to Smithton, Burnie andDevonport Palliative Care volunteers inJuly and August. She also spoke to theDevonport Caprice Club, which hasdecided to buy a variable height massagetable for use in lymphoedema treatmentat the Devonport Community andHealth Centre.
Some of our members will be involvedin the Palliative Care Conference inHobart on September 11-14. It is to beattended by 500-700 delegates.
The next meeting of the TasmanianNetwork will be at the fire station inCampbell Town on November 17.
Contact: Joan Williams (03) 6421 7700or [email protected]
Not everyone will be able to joinus at this year’s main Field ofWomen in Adelaide.
However, many women areplanning mini Fields in their owncommunities around Australia (seelist below).
For more information, contactyour state representative or phoneWendy at the Network’s head officeon (03) 9805 2500.
ACTCanberra
NSWCampbelltown Illawarra regionGriffith GoulburnSydney TareePenrith
QueenslandToowoomba CairnsVictoria Point North BrisbaneSouthport BundabergLaidley Ipswich
South AustraliaMount Gambier Murray Bridge
TasmaniaHobart
VictoriaSan Remo BendigoRingwood TraralgonMeadow Heights MelbourneFerntree Gully HeidelbergArarat
Western AustraliaPerth MidlandRockingham AlbanyGeraldton KarrathaKalgoorlie BooragoonCannington MirrabookaWarwick JoondalupFloreat Park InnalooWhitfords
QUEENSLAND
The Wesley Breast Clinic isplanning a gala fashion event at
the Greek Club and Convention Centrein the West End on October 25. All themodels will be breast cancer survivors,modelling fashions by Bianca Steffini, aswell as underwear and swimwear byColoplast. If you would like to join thisevening of fashion and fun, phoneBarbara Quinn on (07) 3232 7594.
Workshops for the StrengtheningSupport for Women with Breast CancerProject took place in Brisbane on August3. They addressed issues for women insouth-east and central Queensland.
A luncheon at Lennons on October 24,
as part of Breast Cancer Awareness week,will be a joint project for the QueenslandCancer Fund, BreastScreen andQueensland Women in Public Service.
The guest speakers will include thePremier’s wife, Heather Beattie, JennScott and Janelle Gamble. For bookings,phone Megan Collier at the QueenslandCancer Fund on (07) 3258 2200.
Cairns – far-north QueenslandA workshops for the Strengthening
Support for Women with Breast CancerProject were held on August 25 toaddress issues for women in far-northQueensland.
During Breast Cancer Awareness Week,the following activities have beenorganised for Cairns:• October 22 – breakfast meeting with a
special guest speaker.• October 24 – Looking Good after
Breast Cancer Surgery workshop.• October 27 – Connect Program.
For more information, phone MalFraser at the Queensland Cancer FundCairns, (07) 4031 1555.
Contact: Leonie Young (07) 3255 2355or Janelle Gamble (07) 3353 4151.
A small committee has been formed topromote breast cancer awareness byholding mini fields of FOW silhouettesin several shopping centres throughoutthe state (To be involved call me at thenumber below). We are being supportedin this by Breastscreen WA.
Contact: Carol Bishop (08) 9489 7312or [email protected]
Join one of our miniFields of Women
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I was extremely privileged andhumbled to be part of theInternationally Abreast team that
competed in Toronto, Canada, duringthe dragon boat festival in June.
The organisers had also asked me tomake a presentation about the Field ofWomen at a breast cancer conferencein conjunction with the festival and itwas extremely well received.
There were 13 crews of breast cancersurvivors competing in the festival;that is 13 x 22 women in each boat.
We competed in the open division, aswell as the breast cancer survivor racesand won our division admirably.
There were five Australians on theinternational team: Janelle Gamblefrom Queensland, Caroline Bommerfrom Sydney, Margaret Wolf and mefrom Canberra, and our indomitablecaptain, Michelle Hanton, of Darwin.
Michelle’s captaincy was inspirationaland we were indeed 22 hearts beatingas one as the call was made and thestarter’s gun sounded.
Emotions were high and the feelingof camaraderie and oneness with
women we had never met before wassomething we shall never forget.
There were women in wheelchairs,women with metastatic disease,women from all walks of life united indemonstrating that we can and willbeat breast cancer.
The following quote is from a letterwritten by Charles, the husband ofEleanor, one of the conferenceorganisers and the woman I paddled
Twenty two hearts beat as one in Canadabehind. He wrote: “This weekend hasbeen a special kind of success. Youhave earned the right to wear yourcancer experience as a special badge ofhonour. Your joie de vivre, excitementand caring for one another help to slaythe dragons of fear and anger. Thesearch for the elusive ‘grail’ is not easyfor anyone, but together you light theway.”
Dragon boating is not for everyone,but if you give it a go, I hope you allexperience an international festival.
You don’t have to paddle to be part ofit. And if you do paddle, you don’thave to be super-fit (I’m a primeexample). Supporters are of equalimportance and extremely welcome.We represent the Network whereverwe go and the pink silhouettes alsoenjoyed their Canadian experience.
I would like to take this opportunityto thank Michelle Hanton for settingthe Australian dragon boat movementin motion after hearing Sharon Batt atour Canberra conference in 1998.
Go the Pink Ladies!– Anna Wellings Booth, Canberra.
The victorious Australians of the InternationallyAbreast dragon boat team. Clockwise from the back:Anna Wellings Booth, Caroline Bommer, JanelleGamble, Margaret Wolf and Michelle Hanton.
As an unlikely person to go paddling,the National Dragon Boat Champion-ships in Darwin was some of the mostfun I’ve had post-breast cancer.
Part of the bribe to get me to partici-pate was a promise that I would be theteam’s drummer. Having never seen adragon boat up close, I wronglyassumed this was a cushy job.
I will never forget our sweep Steve’sadvice, when I asked – white-faced andwhite-knuckled – how I was to keep mybalance on that tiny seat high abovethe crew. His response – “Spread thosebuttocks and hang on in” – will beimprinted in my memory forever.
It was amazing how quickly I learnt topaddle – just to get out of the hot seat;even though I did fancy myself in thedaisy-adorned pink wig I had bought forthe role of drummer.
A poignant moment came at theconclusion of the day, when the three
Another memory was the DragonsAbreast team escorting the torch forthe commencement of the ArafuraGames being held the following week.
I even worked a Darwin anecdote intomy presentation as occasional speakerat the University of Technology,Sydney’s graduation ceremony a fewweeks ago. Official photos were takenfor its web site, but now there has beena request for a dragon boat one!
Bakers Delight staff from two localoutlets (Crows Nest and Neutral Bay)were thrilled to see evidence of theirsponsorship. I suggest others withsimilar photos take them in for a ‘showand tell’ session, so that the franchiseescan see the good they help generate.
We came home with more than justour gold, silver and bronze medals – wealso won a sense of achievement andhappy memories.
– Pam Bell, NSW
dragon boat teams cast orchids on thewater during a minute’s silence in honourof the more than 2500 Australianwomen who die of breast cancer eachyear. On-lookers joined in the tribute,adding to its significance.
As we came ashore, the crews of theother dragon boats formed a guard ofhonour. There wasn’t a dry eye in theplace – even spectators were choked upas we ran under their outstretched arms.
National dragon boat championshipsAlmostthe littledrummergirl! PamBell at theNationalDragonBoatingChampion-ships inDarwin.
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On June 15, 1100 friends,family and supporters helpedcelebrate Raelene Boyle’s
50th birthday and five-year survival ofbreast cancer.
It was a spectacular evening inMelbourne, generously sponsored byAustralia Post, Crown and FCLTransport. TV personality, EddieMcGuire, did a sensational job as MC.
Moving speeches from Raelene, thePrime Minister, John Howard, and theNetwork’s National Co-ordinator, LynSwinburne, highlighted the achieve-ments and challenges of Raelene’s life.
Film tributes and poignant images ofthose personally affected by breastcancer were also shown.
We raised the amazing amount ofalmost $350,000 for the Network. Thiswill help cover our core costs, and fundimportant projects such as ‘A Seat at
the Table’, the My Journey resourcefolder for newly diagnosed women,seminars for women with breast cancerand the production of The Beacon.
Australia Post and Raelene alsoprovided financial support so thatNetwork members, many of them fromcountry Victoria, could come and helpher celebrate.
Their appreciation was obvious in themany letters of thanks Raelenereceived. For example: “What a greatnight on Friday. Thank you Raelene
Happy birthday Raelene, a real survivor
The Prime Minister, John Howard, was among theguests who helped Raelene Boyle celebrate her 50thbirthday.
Warrior Women winBreastCare Victoria has agreed to
fund a tour by the Warrior Womenexhibition through regional Victoria.
First displayed in Melbourne inFebruary, and more recently inFrankston, this exhibition receivedsuch positive responses that it wasessential to make it available to asmany people as possible.
The exhibition is the result of morethan 100 women from diverse back-grounds, ages and regions who havehad breast cancer. They collaborated
unforgettable exhibition when it comesto your region. For more information,phone (03) 8430 8419.
Tour datesMelbourne – October 17-28, 2001Daylesford – December 1-13
2002Bairnsdale – March 7-20Benalla – April 6-20Warrnambool – May 5-19Geelong – May 21 – June 2Bendigo – June 15 – July 1Mildura – July 5 – August 11
with women photographers, digitaldesigners, video producers, and writers tocreate images and words reflecting theeffect of breast cancer on their lives.
The tour will be launched inMelbourne on October 22 at the GoyaGallery, Southbank. It will then travel toseven locations throughout Victoria.
The Warrior Women wish to thankBreastCare Victoria for its generosity infunding this tour.
Victorians, we urge you to show yoursupport by visiting this impressive and
for opening your heart and giving usthe chance to celebrate your birthdayand life. As a survivor, it was mycelebration also!”
New Idea set up a birthday messagehotline and e-mail so that Raelene’sfriends and supporters who could notjoin the party could send messages.
These messages were compiled into abook and presented to Raelene at aspecial function at Government Housein Melbourne the following week.
We are grateful to Raelene for heroutstanding contributions to theNetwork, and to those who supportedthe event through their participation,sponsorship and donations.
The event did so much more thanraise funds. The media attentionhighlighted many issues for womenwith breast cancer and certainly raisedthe Network’s profile.
Right: Another athletics champion, MarjorieJackson, was on hand to help Raelene celebrate.
Left: Breast cancer survivors, Carole Heap, JennyChilds, the Network’s National Co-ordinator, LynSwinburne, and Donna Rullo, with the PrimeMinister, John Howard.
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Issues ofconcern ...
The role of hormonesFran Boyle, medicaloncologist, Sydney.
New bookA new book has been released called,
Surviving Survival: Life after Cancer, byMiles Little, Christopher Jordens,Kim Paul and Emma-Jane Sayers.
It is available from the AustralianConsumers Association for $25, pluspostage. Phone (02) 9577 3399.
The role of hormones bothbefore and after a breastcancer diagnosis is an issue of
concern to many of our members. Theissues are complex and often need tobe considered on an individual basis.
We approached Dr Fran Boyle with alist of the questions we are frequentlyasked by members in letters and duringphone calls.
Fran is a Sydney medical oncologistand clinical adviser to the NationalBreast Cancer Centre.
One of her outstanding skills is herability to explain complex issues insimple ways that we can all under-stand.
What role do hormones play inthe development of breast cancer?
Imagine that breast cancer rises like aweed from a seed under the lawn.
The seed may lie dormant for manyyears; then, with the right growthconditions, sprout and become visible.
Hormones are like the fertiliser youput on the lawn – they make the grassgrow, and, if they are there, the weedssprout faster.
The hormones, primarily oestrogen,that make the normal breast grow,come from the ovaries in youngwomen in cycles. Throughout life, asmaller, steady trickle of oestrogen isalso made in fat cells.
Oestrogen may also support thegrowth of breast cancer, but hormonesare not what puts the ‘seed’ there inthe first place – that is unknown inmost cases.
HRT is like continuing to have cycles
– it increases the total time the breastis at risk, but if there are no seedsthere, it is perfectly safe.
When I had breast cancer, pathol-ogy reports showed my hormonereceptor status. What does it meanto be hormone receptor positive ornegative?
Receptors are like the doorways thathormones use to get into the breastcell to deliver messages that its time togrow. They are still present on mostbreast cancer cells and can be seenwhen a special stain is applied to thetissue (receptor positive). This allowsoestrogen to support the growth of thecancer cell.
Blocking the receptors (e.g. withTamoxifen) or reducing the amount of
oestrogen being made by fat cells (e.g.with aromatase inhibitors) maytherefore starve the cancer cell andhelp in treatment.
Some cancer cells lose the doorwaysas they grow (receptor negative) –probably because they are able toswitch on growth in other ways, sodon’t bother to keep making doorways.That means that receptor blockingdrugs will not help in treatment.
How many pre-menopausalwomen who have chemotherapynever have a period again?
After CMF chemotherapy for sixmonths, women under 40 years have a40% chance of menopause, over 40 itis 70%. With Adriamycin-containingchemotherapy for three months,menopause is less likely. With longertreatments, the risk is higher.
When I had chemotherapy, I wentinto instant menopause. I now havehot flushes. What can I do aboutthem? How long will I have them?
Hot flushes happen because thepituitary gland (at the base of thebrain) senses that there is not enoughoestrogen around. It puts outhormones to ‘kick start’ the ovariesand it is these that cause the flushing.The pituitary is most active at night,so flushes may be worst at night. Thissame process happens during naturalmenopause.
In some women, the pituitary getsthe message quickly that its activity isnot getting anywhere and flushes settlewithin a few months or never happen.
On average, they are bad for sixmonths, then gradually improve.However, even after naturalmenopause, one sometimes meetswomen who flush forever. Why thedifference? Maybe it is due to differentbackground levels of oestrogen.
Flushes can be helped by:• avoiding things that precipitate
them – some triggers may be coffee,alcohol and stress;
• relaxation and meditation – theireffectiveness is currently beingstudied;
• a blood pressure tablet calledclonidine
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Many readers of The Beacon knowand love Dr Susan Love’s Breast Book;considered by many as ‘the bible’ onanything ‘breasty’.
Dr Susan Love has also written abook about hormones, Dr SusanLove’s Hormone Book. It is publishedby Random House.
In an empowering and demystifyingbook about menopause, Susan, anoted breast surgeon and women’shealth advocate, tells it straightabout hormones.
“Hormone therapy is neither afountain of youth nor an ‘evilempire’,” writes Susan and herco-author, Karen Lindsey.
“I can’t tell you in this bookwhether or not you should takehormones, but I can spell out thepros and cons, examining the variouspromises that have been made for
menopausal hormone therapy, andletting you know what the side effectsand dangers can be.”
Before she gets into the promises andthe pros and cons, Susan explains whatmenopause is biologically and how itssymptoms can vary widely. Particularlyfascinating is the second chapter, TheMedicalization of Menopause.
Susan’s examination of how womenin other cultures look forward tomenopause, and why the medicalestablishment and the pharmaceuticalindustry have a vested interest inmaking menopause a disease, is aconvincing one. It puts menopauseand hormone therapy into a new light.
Chapter by chapter, Susan reviewsthe scientific evidence for thepromised benefits of hormone therapy–protection from osteoporosis andheart disease – and for the potential
risks – an increased chance of breastand endometrial cancer.
She also answers almost everyimaginable question about alterna-tives to hormones – dietary changes,to exercise, acupuncture and herbs.
While Susan and Karen, whoworked together previously on DrSusan Love’s Breast Book, are up-frontabout their perspective on hormonetherapy, they give women theinformation they need about thevarious hormones available and aquestionnaire to help them assesstheir values. That means readers canmake an informed choice abouthormones during menopause.
This book is not specifically aimedat women who have experiencedbreast cancer. It has been written forthe general population, making it anexcellent reference book.
Dr Susan Love’s Hormone Book
• anti-depressants – venlafaxine is theone that has been trialled, butothers probably also help;
• a herbal preparation calledremifemen may help; and
• hormone replacement therapy (seebelow).
Soy diets and other ‘natural’supplements have proved disappoint-ing in trials.
Should I be concerned aboutosteoporosis in the longer term?What can I do about this?
Osteoporosis is less common inwomen with breast cancer andTamoxifen appears to protect againstit. For women with menopause beforethe age of 50 who are not onTamoxifen there is a risk of bone loss.It is worth checking bone density toensure it’s okay at baseline, especially ifthere are other risk factors, includingthyroid disease and a family history.
Calcium, vitamin D and regularweight-bearing exercise are important.
Studies are on-going for drugs such asclodronate and these should beconsidered if bone density is fallingdespite other measures.
Is hormone replacement therapysafe for a woman who has hadbreast cancer? Is anyone doingresearch in this area?
Traditional wisdom is that thefertiliser should be put away if theremight be weeds in the lawn, so HRThas been avoided in the past.
Several recent studies have comparedwomen who continued HRT withthose who stopped and found noadditional risk of breast cancer relapse.However, these studies are likely to bebiased in a number of ways, so arandomised trial is being performed totest the issue properly.
The study is called HABIT and isavailable for Australian women.Information can be obtained byphoning the ANZ Breast Cancer TrialsGroup on (02) 4968 9803.
Are there any ‘natural’ therapiesthat can help with menopausalsymptoms?
See above
I suffer from a dry vagina andintercourse is uncomfortable. I donot want to take hormone replace-
ment therapy. What else can I do?
Some things that help vaginaldryness are:• not washing with soap – use a
substitute, as you would on yourface;
• regularly using a moisturiser, e.g.Replens or Silk;
• using a lubricant during intercourse;• treating infections such as thrush;
and• using oestrogen in the vagina –
Vagifem is recommended, as it isnot absorbed into the rest of thebody
I feel I need specialist advice –what sort of doctor should I see?
Most medical oncologists will be ableto assist, but consider a gynaecologistwith an interest in menopause orgynaecological oncology, or anendocrinologist who specialises inosteoporosis as an alternative.
For women in NSW, the NaturalTherapies Unit at the Royal Hospitalfor Women in Randwick runs anumber of trials and can provideinformation.
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My Journey
My daughter, my sister and Iwere diagnosed with breastcancer within five years.
You could say that we have a sort ofnod-nod, wink-wink camaraderiebetween us now – our own privatespeak that tells others they simplywouldn’t know what we know, becausethey haven’t faced what we’ve faced –the experience of cancer.
We are members of an exclusive sub-group of the wider group of breastcancer survivors!
I can only speak for myself in describ-ing the experience of a breast cancerfamily – tell my own story – althoughI can make some observations.
Breast cancer has given us all aheightened appreciation of thepleasures of life – large and small.
It has ensured that we are more self-centred and devoted to our health andwellbeing – often a difficult exercisefor mothers.
We are also enthusiastically involvedin physical activities that keep us fitand strong, eat lots of fruit andvegetables, and drink lots of water anda glass or two of red wine in theevening for its demonstrated healtheffects, miss no opportunity to walk inthe bush and on the beach, traveloverseas or interstate, dine withfriends, go to the theatre, read goodbooks and see good films. In short, wehave adventures.
My sister, a grandmother, has apassion for spending time with hergrandson.
My daughter’s diagnosis at the age of31 – she was the first – stands in mymemory as the most awful event of mylife. Beside it, my diagnosis andtreatment seem almost insignificant.
My sister’s diagnosis a couple of yearslater was sad and unwanted, but I didnot feel the level of devastation I hadwhen it was my daughter.
By then I had learned a great deal byjoining breast cancer advocacy groups,participating in National Breast
Cancer Centre workshops andattending cancer conferences.
“You are an imposter,” my daughterchided me when I joined breast cancersurvivors in lobbying activities. “Youhaven’t had cancer – you don’t knowwhat the real experience is!”
When my diagnosis was made acouple of years further on, I knew a lotmore about breast cancer and itstreatment. I had joined theInternational Breast Cancer Study (theIBIS) trial of Tamoxifen four years
earlier to make my contribution tocancer research. I was alert to the signsand was being carefully monitored as atrial participant.
Certainly my diagnosis was a surprise,but only a mild one. The sharpestaspect of that surprise was in knowing Iwas taking Tamoxifen (I knew thisbecause of the side effects it initiallycaused me) and having believed thatits preventative effects would protectme from cancer.
It didn’t and the reason seems to bethat this family tends towards theoestrogen-negative cancers thatTamoxifen has no positive effect on.
I got over that surprise and under-took a core biopsy that took ninesamples and yet returned a negativeresult – a result that indicated therewas no malignancy.
Before I could get my mind roundthis pleasing result, I had the offendinglump surgically removed andsubsequent pathology indicated twosmall cancers. This was an emotionalroller-coaster I hadn’t expected!
The best part of the year thatfollowed was when the younger of mywonderful sons put his life on hold andtravelled from Brisbane to care for me.
He shopped, cooked, cleaned, andtook me to appointments and onoutings to enjoy myself. Hedetermined that I needed high-proteinmeals to speed my recovery – and theyneeded to be attractive and tasty. Hebecame innovative. It was like havingJamie Oliver in the kitchen!
There is no conclusion to this tale –like all cancer stories it is a work inprogress. As my daughter and sister do,I am carrying on my life as before – butwith extra verve and greater focus –the gym, swimming, walking withfriends, fine dining and entertainment.
I also carry on my advocacy work onbehalf of breast cancer survivors – butI am no longer an imposter!
– Judith Maher, Canberra
* Judith’s complete story, including thedifficulties she experienced withdrainage tube problems, can be foundon our web site – www.bcna.org.au
No longer an imposter
WendyMcCluskyrecently joinedthe Networkteam as ourcommunityrelations officer.
Wendy is busyco-ordinatingthe Field ofWomen forBrisbane and Adelaide, as well as allthe mini Fields around the country.
She is married to Michael and hasthree young boys to keep her busy.
Wendy has been touched by breastcancer through the diagnosis of hermother-in-law, her cousin and a closefriend, and is finding her work at theNetwork office in Melbourne reward-ing, stimulating and challenging.
Welcome Wendy!
Welcome to Wendy
Judith Maher (above), her daughter and her sisterwere all diagnosed with breast cancer within fiveyears.
9
Polly Letofsky wandered intoour office in October 2000,not knowing anyone at the
Network, or really anyone else inAustralia.She said she wanted to raise $10,000on the Australian leg of her globalwalk.
Having collected $30,000 indonations (ranging from 50¢ to$2000), she is leaving us.
Life at the Network just won’t be thesame without Polly’s cheery “Hellooothere” every few weeks and her bubblyspirit (even when she has beendrenched, cold, hot, driven mad by theflies, dust, humidity or anything elsethat’s gone her way).
In addition to her fundraising, Pollyhas spread the word about theNetwork through public speakingengagements, newspaper articles andone-to-one conversations withAustralians personally affected bybreast cancer.
Thank you to all of those people andgroups who have supported Polly and
Designer helpLiz and Fran at Elisabeth Grant Design
in Canterbury, Victoria, are greatsupporters of the Network.
They have been with us since ourNetwork’s earliest days, working on withpro-bono designs and layouts for manyof our publications and brochures.
Thanks Liz and Fran!
Bon voyage Polly
the Network on the Australian leg ofher global walk for breast cancer,especially all the Lions Clubs, whichwere sensational.
Polly is continuing her walk throughAsia and would love to hear fromthose she has met in Australia.
To keep track of her, visit her website – www.globalwalk.org – or send ane-mail to [email protected]
Thanks Polly!
Victorian state representative, Gerda Evans, withPolly Letofsky.
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ThanksIn the winter issue of The Beacon, we
asked readers to help us with the runningof the Network by making a donation.
Thank you to all those who sent indonations, which totalled almost$14,000.
We were also touched by the lettersof appreciation we received, especiallyfrom those who told us how useful,informative and supportive they foundThe Beacon.
Networkmember, JudyShepherdson,recently hadher volunteerworkrecognised bythe MurrayShire Mayor.
A tribute inThe RiverinaHerald highlighted Judy’s endeavoursto establish the Echuca Moama BreastCancer Support Group:
“Judy, having recovered frombreast cancer herself, saw a great needfor a support group to help women andfamilies dealing with breast cancer inour area. She founded a much-neededgroup that has assisted many in theregion with support and loving care.”
We know Judy has worked hard tobuild up the group and are delightedto see that her efforts have beenrecognised and appreciated.
Congratulations Judy
Since our A Seat at the Table projectbegan in 2000, 145 women haveregistered as potential ‘consumerrepresentatives’. More than 65 womenhave been appointed to committees,contributed to decision-making forumsand presented at conferences.
Since the last issue of The Beacon,these women have been appointed toworking groups and committees:National Breast Cancer Centre’s(NBCC) team working with family cancerclinics to improve the quality of the servicesthat they offer to women – Sally Lynch(NSW).
NBCC Improving supportive care foryounger women with breast cancer team –Karen Wright (Qld) and RosannaMartinello (NSW).NBCC Young Women’s Advisory Group– Mary Macheras-Magias (Vic.),Rosanna Martinello and MaryanneMaher (NSW).NBCC team developing a web site for use
by clinicians with women newly diagnosedwith breast cancer who have a familyhistory of the disease – Judith Maher(ACT).Anti-Cancer Council of Victoria’s CancerConnect Program Planning and AdvisoryCommittee – Judy Sammut (Vic.).
NHMRC-funded project ‘Consumerinformation materials and a communica-tion aid for diagnostic tests for breastdisease’ –Alex Forster (NSW).
Queensland Health’s Strengtheningsupport for women with breast cancerplanning workshop – Veronica MacaulayCross, Margaret McKenzie, JulieMcGilvray, Sylvia Gustaffson, KayeMcAlister, Leonie Young, DianeShore, Margaret Petrie, Joan Giachin,Mena Crew, Teresa Sese, JanetBuckett, Beverley Cross and GladwysPound (Qld).
To learning more about A Seat at theTable, phone Gil Paulsen on (03) 98052500 or e-mail [email protected]
More seats at the table
10
New resources
Helping a friend with the ‘Big C’Kathy Kuipers,QueenslandIt’s really difficult at times to find
the words to say when someoneclose is undergoing treatment for
cancer. We want to help – but we’renot sure we know the best way.
Network member, Kathy Kuipers,has put together a list of do’s anddon’ts, as well as some great examplesof ways she was helped by friends whenit was her turn.
We think this is a fabulous list.Wouldn’t it be a really useful resourceto hand to a friend who says, ‘How canI help?’
We intend to prepare a brochure ofKathy’s many strategies for helping forjust that purpose. If you have someother ideas, please send them to us forconsideration.
Do• Provide regular meals (if your friend
is receiving chemotherapy, ask whatshe likes to eat).
• Leave cakes and other delights onthe doorstep.
• Send cards and flowers for noreason.
• Take your favourite bucket, glovesand cleaning materials when youvisit and insist on cleaning thebathroom/tidying the kitchen/hanging out the washing/cleaningthe windows/making the beds(make sure your friend isn’t in it).
• Help out in the garden, mowing/taking stuff to the dump/weeding.
• Keep your visits short and alwaysring first.
• Be persistent with following yourfriend up – she needs you.
• Give her a hug.• Let her cry and be sad.• Listen.• Let her talk about dying.• Tell her specifically when you can
be called on and what you can do(lifts to and from treatment/visitingat the hospital/coffee afterwards/emergency childcare/help with theshopping/going to the library, etc).
• Help her to make a list of peoplewho can help out in an emergency(phone numbers, times and days ofavailability).
• Lend her trashy novels or mindlessmagazines.
• Organise outings with groups offriends (without the kids).
• Care for her partner too (ask yourpartner to meet him for lunch, takehim out for a drink, go to themovies).
• Ask after him as well, not just yourfriend.
• Ask him about his fears and hisfeelings (scary, I know).
• Hang in there for the long haul,treatment goes on for months.
Don’t• Tell her about the latest cure you
have heard about (she’s probablyalready been told about it by fiveother people).
• Say things like ‘There must be somereason for this’, ‘Everything will
turn out well in the end’ or ‘Youlook good’ (Yeah, yeah, sure!).
• Tell her all your other cancer horrorstories.
• Tell her all the ways she ought to bemodifying her diet/changing herlifestyle/doing more relaxation (it’shard enough getting out of bed inthe morning without thinking aboutchanging anything).
• Give up on her or stop ringing.• Be offended if she doesn’t get back
to you (life may be overwhelmingand energy lacking).
• Be afraid of taking the first step andoffering to help out, have a cuppa, achat or whatever.
• Be afraid that you ‘Won’t knowwhat to say’ – be yourself, that isyour gift to someone whose life ischanging.
• Accept ‘I’m fine’ when you ask afterher or her partner.
• Say ‘Call me anytime’ or ‘If there’sanything you need ...’ Be specific –‘I will bring a meal on Tuesdays’, ‘Iwill pick your child up from pre-school’, ‘I will baby-sit your childwhile you have a nap’, etc (it can beincredibly difficult to ask for help).
Good things my friendsgave me
• A celebration morning tea on theday I finished chemo.
• Wonderful meals (and desserts).• One group of friends all wore hats
on an outing when I had no hair!• Encouragement to keep going when
I wanted to give up.• Cleaning the bathroom, cleaning
windows, hanging up the washing (aproblem after surgery that reducesthe strength and endurance of armmovement) and pushing theshopping trolley.
• A week’s holiday at a resort!• Many treasured gifts, such as a
special teacup, books, beautifullyfragrant soap and a massage eachweek.
ABCD web siteThe iSource National Breast Cancer
Centre has launched the Australia’sBreast Cancer Day (ABCD) web site,containing a nation-wide calendar ofevents.
The site is a chance to facilitate a co-ordinated approach to breast canceractivities during October in the lead-up to ABCD on October 22.
If you would like your event listed onthe site, forward your details to JennyDavis at [email protected] or phone(02) 9334 1711.
11
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Letters to the Editor
I am writing to highlight the marvel-lous efforts of the Illawarra Breast CancerSupport Group.
Gloria Swift and a group of ladiestravelled to Albury, Wagga Wagga andGriffith to hold meetings for the breastcancer support groups.
They gave us an insight into how andwhy their support group was successful.
And this was done at no cost to us.They paid for all their accommodation,travel costs, etc.
The Albury group would certainlywould like to say a big thank you tothem. That’s what networking is about!
– Carol Stevenson, Albury
I wish to thank Kathy Kuipers for thearticle, Facing the Fears and Loss in issue15 of The Beacon (see my letter below).
Thanks also to the Network for puttingtogether such an informative newsletter.I haven’t known about The Beacon forlong, which is a shame, but I am makingsure that everyone I come into contactwith in my situation is fully aware of itand able to benefit as I do. Please keepup the good work.
– Wendy Hall,Palm Beach, Queensland
Dear KathyAfter reading the article you wrote in the
latest issue of The Beacon I felt I had tocome here to my computer and write toyou immediately.
Thank you for putting into words somany of the emotions I have felt over thepast 11 months. Thank you for admittingthat it’s not such a wonderful experienceand thank you for showing me that thereis light at the end of the tunnel.
Your words have given me such a boost,just by letting me know that I’m not alone– a feeling I’m sure you’re no stranger to.I agree that a lot of good can come fromthe horrible experiences we must gothrough and I try hard to make my lifebetter because of them (sometimes I thinkI succeed, but other times I probably don’tdo such a good job). We all need words ofencouragement and it makes all thedifference when they come from someonein the same boat.
Kathy, if your aim in writing this articlewas to reach out and touch others, letme say that you have most definitelysucceeded. I wish you happiness, health,strength and courage in your journey.
– Wendy Hall
UPCOMING EVENTSSeptember 1-7: Special Field of Women, Suncorp Metway Park (opposite TreasuryCasino), Brisbane (Silent Walk and launch September 1).Contact: Lyn Pelgrove, Twelfth Night Theatre, (07) 3252 5122.September 7: New Idea Breast Cancer Forum, Wollongong ($5).Contact: (02) 4272 4482.September 15: Gawler Foundation’s 18th annual conference, ‘Holistic Approach toSurviving Cancer’, Camberwell Centre, Victoria ($80, bookings essential).Contact: (03) 5967 1730.September 15: Metastatic Breast Cancer Information Day, Royal North ShoreHospital, Sydney ($20, bookings essential).Contact: Mandy O’Reilly, (02) 9926 7810, or Louise Kippist, (02) 9926 6584.September 20-22: Australasian Society for Breast Disease Meeting. Marriott Resort,Surfers Paradise, Queensland.Contact: (07) 3846 1585 or e-mail [email protected] (date to be advised): NT Breast Cancer Photographic Exhibition.Contact: NT Cancer Council, (08) 8927 4888.October 3: Action for Breast Cancer SA’s AGM, Anti-Cancer Foundation, Adelaide.Contact: Bridget Mills, (08) 8336 8140.....October 13-14 and November 4: Cancer Consumer Advocacy Training, Sydney (free).Contact: Ron Gale, (02) 9334 1748.October 17-28: Warrior Women Exhibition, Goya Gallery, Southbank, Melbourne.Contact: (03) 8430 8419.October 20: Best Breast Breakfast, BCAG(NSW) and NSW Breast Cancer Institute,at Old Government House, Parramatta ($10).Contact: (02) 9845 8450 or 8468.October 20-22: Major Field of Women, Victoria Square, Adelaide.Contact: Cath Tonkin, (08) 8333 3964 or 0408 050 594.October 21-22: mini Fields of Women across the country.Contact: Wendy McClusky, (03) 9805 2500.October 21: Moving Forward – young women and breast cancer forum, Novotel,Darling Harbour, Sydney.Contact: NSW Cancer Council, (02) 9334 1846.....October 21: ACT mini Field of Women, Lake Burley Griffin (meet at Regatta Point).Contact: Anna Wellings Booth, (02) 6247 8470, or Tania Pirotta, (02) 6230 9154.October 22: Australia’s Breast Cancer Day.October 22: ‘Pink Ribbon Breakfast on Australia’s Breast Cancer Day’, Sydney.Contact: Belinda Gibson, (02) 9300 6735 or e-mail [email protected] 24: Darwin Runners Club’s special gold coin donation running event (Allproceeds to NT Breast Cancer Voice).Contact: Michelle Hanton, (08) 8941 8923.October 24: Australia’s Breast Cancer Day Lunch, Lennons Hotel, Brisbane, hostedby Queensland Women in the Public Service (QWIPS), supported by QueenslandCancer Fund and BreastScreen Queensland. Guest speaker: Heather Beattie.Contact: Marianne Zangari, (07) 3350 7426.October 25: Bosom Buddies 1901-2001 Celebration of Life Fashion Parade, NationalConvention Centre, Canberra, 6.15pm for 7.15pm.Contact: Norma Bradley, (02) 6254 5286.October 27: Early breast cancer information day, Royal North Shore Hospital, Sydney($30).Contact: Mandy O’Reilly, (02) 9926 7810, or Louise Kippist, (02) 9926 6584.October 28: Thanks to women for participating in clinical trials, Goya Gallery,Southbank, Melbourne, 2pm. All welcome.Contact: Susan Fitzpatrick, (03) 9635 5175.November 13: Education and support program for male partners of women diagnosedwith breast cancer, Peter MacCallum Cancer Institute, Melbourne.Contact: Andrea Cannon, (03) 9656 1111.November 17: Tasmanian Network meeting, Campbell Town fire station.Contact: Joan Williams, (03) 6421 7700.December 9: BCAG (NSW) final general meeting for the year.
12
THE BEACON
The Beacon is the newsletter ofBreast Cancer Network Australia.Editor: Lyn Swinburne (03) 9805 2500Layout: SubstitutionYour comments and items for the nextnewsletter are welcome. Send them toPO Box 4082, Auburn South,Victoria 3122.
YOU’RE NOT YET ON OUR MAILING LIST?Contact: Gil Paulsen, phone (03) 9805 2500, 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
The Network welcomes these groupsunder its umbrella:
• Albury Wodonga Breast CancerSupport Group, NSW
• Port Adelaide Breast CancerSupport Group, SA
During the next few months we willbe contacting all our member groups.We hope that each of them will beable to identify a woman from theirgroup willing to be their Networkcontact person. This should makecontact between us all much easier,and allow us to involve you all muchmore in our projects and activities.
SeekingShelter
New on the web site• Judith’s story – Judith Maher.• Details about the Field of Women
and mini-Fields across Australia.• Guidelines for conducting a mini-
Field in your community.• A full report about Raelene Boyle’s
birthday celebrations and acknowl-edgements.
• The Network’s policy on Herceptin.• The Network’s member groups.• Complete state reports.
A risk management clinic will openat the Familial Cancer Centre ofMelbourne’s Peter MacCallum CancerInstitute during September.
The clinic will be for women with anespecially high risk of developingbreast or ovarian cancer. For example,women with a strong family history ora mutation in BRCA1 or BRCA2.
These women, who will have hadtheir risks assessed by a family cancerclinic, will attend the new clinic everysix months for mammograms, trans-vaginal ultrasounds, blood tests (e.g.Ca125) and breast examinations.
A breast surgeon, a gynaecologiconcologist and a cancer geneticspecialist will be on hand for breastexaminations and to discuss the resultsof the day’s tests or any other issuesthat come up about each woman’spersonal risk management plan.
Each woman will see the same team
New risk management clinic in Melbourneof specialists during their visits, and aspecialist nurse will be a first point ofcontact for problems between visits.
Although this will be Australia’s firstrisk management clinic, similar bodieshave been running for several years inthe UK and Canada.Contact: Mary-Anne Young,(03) 9656 1064.
Young women’s dayMoving Forward will be a forum for
young women with breast cancer.It will be a chance for young women
touched by breast cancer, their familiesand health professionals to hear fromAustralia’s top experts; express theirconcerns; address the specific issuesthat apply to young women; andpropose solutions.
In addition to the up-to-date medicalinformation, the day will offer adviceabout fertility, health and lifestylefactors such as relationships, nutritionand coping strategies.
Young women will also be able tomeet other young women and getpractical help to act on now.
This is an initiative of Young BCAG(Breast Cancer Action Group) NSWand is endorsed by the Cancer CouncilNSW. Breast Cancer Network Aus-tralia also supports this initiative.
Moving Forward will be held at theNovotel, Darling Harbour, Sydney onOctober 21, from 9am until 4pm.
Contact The Cancer Council NSWon (02) 9334 1846 to register.
BreastCare Victoria is an initiative ofthe Victorian Department of HumanServices. It is working to improveoutcomes for Victorian women andtheir families affected by breast cancer.
Many Network women are onBreastCare committees across the Stateand, together with doctors andadministrators, are trying to makethings better for women in their area.
Many organisations pay lip service tothe need for consumer input, butBreastCare Victoria has ‘put its moneywhere its mouth is’. It has recognisedthe need for women involved in thiswork to be supported and trained, and
BreastCare supports Victorian womento increase their knowledge of the latestareas of interest in breast cancer.
Health professionals attendconferences to update their knowledge;and now our representatives can too.BreastCare Victoria has set up a grantscheme, to be administered by theNetwork, that will allow women toattend these conferences.
Guidelines and application forms areavailable from the Network’s headoffice if you want to apply for a grant.
This is a wonderful initiative, whichthe Network is delighted to support.We hope other state HealthDepartments will follow Victoria’s lead.
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