Issue 10 Autumn 2000 Network Australia To Tamoxifen or not?€¦ · Women silhouettes in the corridor of the Sir Charles Gairdner Hospital, as part of a joint display by the hospital

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Autumn 2000Issue 10

INSIDE...STATE ROUND-UP 2

OLYMPIC TORCH BEARERS 3

ISSUES OF CONCERN 4

MY JOURNEY 6

LETTERS TO THE EDITOR 7

UPCOMING EVENTS 8

Breast CancerNetwork Australia

newsletter

To Tamoxifen or not?into account. A number of variableshave to be considered and, unless we areprepared to be persistent, the answers arenot always forthcoming.

The other part of the equation isbalancing the potential benefits ofTamoxifen with the possible side effects,which can be quite severe.

This issue of The Beacon addressessome of these questions for women whoare taking, or considering taking,Tamoxifen as part of their treatmentplan following a breast cancer diagnosis.

We put some of the most commonquestions to Dr Fran Boyle, a Sydneymedical oncologist. We have alsoincluded an article by Sally Crossing,describing the process she used to decidewhether Tamoxifen was right for her.

This is a topic of concern for manywomen. Since announcing that this issueof The Beacon would featureTamoxifen, we have received a numberof letters and calls welcoming access tomore information.

This is a question facing manywomen diagnosed with breastcancer, as Tamoxifen increas-

ingly plays a role in treatment protocols.Tamoxifen citrate has been on the

market for many years. It is a non-steroidal drug, or synthetic type ofhormone, that has a powerful anti-oestrogenic effect on breast tissue, whichmakes it a potentially useful drug,especially for women whose tumours areoestrogen receptor positive.

In other parts of the body, Tamoxifencan mimic oestrogen. This can promotebone strength and reduce heart disease,but the effects may also be less desirable,increasing the risks of endometrial oruterine cancer and blood clots.

We have evidence that Tamoxifen hasundisputed benefits for many women.For others the benefits are less clear.

It can be difficult to find out what thepercentage benefit of taking Tamoxifenfor five years may be for an individual.

Each woman’s situation must be taken

Full-time executive officer for NetworkIn a significant move, which reflects

its enormous growth, Breast CancerNetwork Australia has appointed afull-time executive officer.

Gil Paulsen is well known toVictorian Breast Cancer ActionGroup members, as she is currently itssecretary. She was previously theVictorian co-ordinator for theNational Breast Cancer Centre.

Gil has wide professional experiencein the breast cancer area and brings awonderful array of skills to theNetwork, including project manage-ment, tertiary teaching and runningher own consultancy business.

Welcome Gil.

The Network is onthe move

Breast Cancer Network Australiahas moved its office to Camberwell,Victoria.

Our mailing address remains thesame – PO Box 4082, Auburn South,Victoria 3122 – but please note ournew contact details.

Phone: (03) 9805 2500Fax: (03) 9805 2599E-mail: [email protected]: www.bcna.org.au

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State round-upVICTORIA

QUEENSLAND

NORTHERN TERRITORYTASMANIA

WESTERN AUSTRALIANEW SOUTH WALES

THE ACT

If your group would like to highlightan activity or a project, contact yourstate representative to have it in-cluded in the next ‘State Round-Up’.

We are confident that 2000 isgoing to be a great year for

making a difference for people affectedby breast cancer.

Twenty-one graduates from theConsumer Advocacy and ScienceTraining Program are already findingslots for themselves on committees.

At the annual general meeting of theBreast Cancer Action Group NSW, wedeveloped a structure for handlingactivities and revisiting our priorities.

A large donation from the Rylstone/Kandos Breast Cancer Appeal will beused to help women in the Central Westaccess radiotherapy treatment.

We look forward to welcoming theNetwork’s Dragons Abreast racers inMarch for the finals. The BCAG NSWteam came second in its first regattabefore Christmas.

Contact: Sally Crossing (02) 9436 1755or [email protected]

Lake Burley Griffin will never bethe same now that Dragons

Abreast has taken to the water!About 22 women have registered their

interest and we have been averaging 10-15 at our Thursday morning training.

The most exciting outcome is that it istruly a Network team – we have womenfrom the ACT Breast Cancer SupportGroup, Bosom Buddies, QueanbeyanSupport Group and women who do notbelong to a group.

The closing date for the raffle for ‘TheHouse that Bev Built’, which will benefitBosom Buddies, has been extended untilMay 31. Phone Bev Higgins on (02)6231 2658 for tickets.

Funding for prostheses is part the ACThealth budget due to successful lobbyingfrom Calvary Hospital and ourselves.

Contact: Anna Wellings Booth (02)6247 8470 or [email protected]

Things have been a little quietover Christmas and New Year,

with quite a few members away onholidays. Those left behind continue tosell our lovely calendar – which has beenwell received.

Three of our group had an interestingand positive morning tea with ourMinister of Health recently.

We are all still looking for any oldprostheses.

Contact: Sue Tully (08) 8927 3327 [email protected]

On Australia’s Breast CancerDay, we displayed the Field of

Women silhouettes in the corridor of theSir Charles Gairdner Hospital, as part of ajoint display by the hospital andBreastScreen WA.

Some of our members were able to talkwith women having treatment for breastcancer. Another member volunteered tobe photographed having a mammogramfor the commercial television channels.

Our aim for the new year is to increaseour knowledge of breast cancer treat-ment, management and issues. A majorobjective is to encourage the placementof breast care nurses. An inauguralmeeting has been held along with theCancer Foundation.

Later in the year, the group will co-host,with the National Breast Cancer Centreand the Cancer Foundation, a forum forwomen with breast cancer.

Contact: Carol Bishop (08) 9489 7012.

The Department of Health andHuman Services is conducting a

state-wide review of access to services forTasmanians at risk of, or experiencing,lymphoedema.

The Tasmanian Breast CancerNetwork received a draft copy of thediscussion paper for comment. We werenot among those consulted before thisdraft was released, but hope to ensure weare included in future discussions.

St Marys, on the east coast, has workedhard to raise money for a laser machinefor treating lymphoedema.

During January, Prof. Neil Piller andhis team from Flinders University inSouth Australia were in St Marys to trainfifteen health care professionals in theuse of the laser. A seminar for patientswas also well attended.

The clinic should be fully operationalby the end of March.

Contact: Pat Mathew (03) 6492 3257 [email protected]

We at Breast Cancer Queens-land are looking forward to a

year packed with interesting events.Plans are afoot for a public meeting to

be held in conjunction with the NationalBreast Cancer Centre and the Queens-land Cancer Fund.

More about that next issue.Sadly, one of our founding members

has had a recurrence, so we have ralliedaround to support her.

Contact: Janelle Gamble (07) 33534151 and Leonie Young (07) 3341 7570or [email protected]

Lymphoedema is clearly on theagenda, thanks mainly to

consumer concerns. Women fromVictoria, and other states, have beeninvolved in developing research prioritiesfor the lymphoedema summit.

Victorian consumers are also helpingre-write the instructions given to womenfollowing surgery. This will be launchedat the lymphoedema conference inMelbourne during April.

Contact: Sue Lockwood (03) 98780736 or [email protected]

Open communication channels areimportant. Until now, we have keptall members’ names and addresses ona central database in Melbourne.However, we would like to give ourstate representatives a list of membersfor their state, so that they know whoand where you are.

These lists would be carefullyguarded, but if you do not want yourname given to your state representa-tive, please notify this office by theend of March.

– Lyn Swinburne,National Co-ordinator

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Olympic torch bearers

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We know of five breast cancersurvivors who have been chosen tohelp carry the torch to the openingceremony of the Sydney Olympics.They are:• Lyn Swinburne, the Network’s

national co-ordinator.• Pat Mathew, state representative

for Tasmania.• Raelene Boyle, former Olympian

and Network board member.• Rosanna Martinello, leader of the

Younger Women’s Group for theNSW Breast Cancer Action Group.

• Felicity Hay, presenter of the KeepAbreast video, produced by theSydney Breast Cancer Institute inconjunction with the NationalBreast Cancer Centre and AMP.

If other women have been nomi-nated by their local communities, letus know who they are and we willkeep you informed about the progressof their training.

Network badgesThe Network has been inundated

with requests for its pink enamel badges.Thank you to those of you who

included a note letting us know howmuch you value The Beacon and thework of the Network.

We were also touched by the numberof women who wrote, ‘I will wear mybadge with pride’.

For a badge, send a $5 cheque ormoney order made payable to BreastCancer Network Australia. Include astamped, self-addressed envelope.

Special thanks to David Lorem for his photographsat the ‘think tank’, including the badge above.

Dragon boat update

The dragon boat team has aname – Dragons Abreast.Representing Breast Cancer

Network Australia (BCNA), our majorsponsor is AMP. Other sponsors areBakers Delight, Puma, Sydney DragonBlades, Dragon Boat Northern Territoryand the Southern Cross Club, Griffins, inthe ACT.

NSW members of the team havealready competed in local regattas. TheACT is proving to be courageous –training on Lake Burley Griffin at 7am.

NT members were represented at theAustralia Day races on Lake Alexanderand at the Chinese New Year regatta.

BCNA will be well represented at theAustralian National Titles by DragonsAbreast – in pink lycra ‘rashies’, theteam will stand out!

The National Titles will be held onMarch 18 at the Penrith Regatta Centre– the official Olympic course. Supportersare welcome. We’d love a cheer squad!

– Michelle Hanton,National Dragon Boat Co-ordinator

Madeleine has arrived

Madeleine has arrived inMelbourne and is beingstored by Patterson Cheney.

Madeleine, of course, is a beautiful1954 vintage BMW donated to theNetwork by Darwin woman, MadeleineLuck (see story in The Beacon Issue 9).

Transporting this lovely old car wasmade possible thanks to the help of manyNorthern Territorians, including theMinister for Transport, Mick Palmer,who used his contacts to make it happen.

We are indebted to the JapaneseEngine Centre, TNT Automotive,the Territory Insurance Office, AIMInsurance Melbourne and PattersonCheney in Ringwood.

Melbourne network member, BrianMcDonald, is seeking advice anddeveloping a plan for us to make themost effective use of this wonderful gift.

Madeleine Luck has also come up withanother brilliant plan to help womenrecovering from breast cancer treatment.

Network ‘think tank’

As this issue of The Beacon wasgoing to print, a national‘think tank’ was being held in

Melbourne on January 28-29.The state representatives demonstrated

their commitment to the Network bybeing meeting all their expenses for thismeeting.

The key task was to determine howbest to achieve the Network’s objectives.

This involved revisiting the ‘Making aDifference’ report from our 1998 Can-berra conference and attempting toprioritise the many issues facing us, aswell as clarifying the responsibilities ofthe state representatives and the nationalboard. Formulating the plans for thisyear’s Field of Women was high on theagenda. Watch for a think tank report inthe next issue of The Beacon.

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Issues ofconcern ...

Answering your questionsabout TamoxifenWho should use Tamoxifen?

Tamoxifen is useful in:a. Women (over age 40 generally) with

newly diagnosed breast cancer thatis hormone receptor positive, whereit reduces relapses, improves survivaland reduces the chances of a newcancer in the other breast, heartdisease and osteoporosis.

b. Women with relapsed breast cancerthat is receptor positive, where it hasa response rate (shrinks or stabilisesthe cancer) of about 50% of women.This is particularly likely if thecancer is in bone only.

c. Women who have had surgery forDCIS, where it reduces the risk of afurther cancer in both breasts.

d. Women at high risk of breast cancer,e.g. strong family history, to preventthe disease.

In each case, the potential benefitsneed to be weighed against the sideeffects and the decision individualised.

How does it work in the body?

Normal breast cells get messages fromhormones such as oestrogen to tell themwhen to grow. The hormones bind toreceptors on the cell, and the receptorcarries them into the nucleus, or brains ofthe cell, where they bind to DNA andset genes in motion to promote growth.

Imagine that the receptor is shaped likethe jaws of a crocodile, and the oestro-gen fits in neatly, whereupon the jawssnap shut. Some cancer cells keep thesereceptors, others do not (they have learntto grow without the signal, usually due todamage to genes that become perma-nently switched on).

can snap shut, and so in these parts ofthe body it works just like oestrogen.That is why it has some of the benefits ofoestrogen on these organs, like prevent-ing heart disease and osteoporosis.

Is Tamoxifen safe? What are the majorside effects?

There are two categories of side effect:a. Blocking of oestrogen in organs with

receptors the same as the breast, e.g.ovary and pituitary glands, interfer-ing with the menstrual cycle andcausing hot flushes and vaginaldryness as at menopause. These sideeffects are common at least initially.Depression, like that at naturalmenopause, may also be caused byblocking of oestrogen action in thebrain.

b. Acting the same as oestrogen inorgans with the other kind ofreceptor, e.g. causing clots in veinsand rarely, growth of the lining ofthe womb (endometrium), and evenmore rarely, cancer of the womb/uterus (2-3/1000). These side effectsare less common. Nausea is probablycaused by a temporary effect on theliver, and passes within a few weeks.

Should women ask their doctors for moretests while they are taking Tamoxifen –cervical examinations, liver functiontests, eye tests, etc?

The issue of whether an ultrasound ofthe womb at regular intervals is necessaryhas not been resolved, and is not recom-mended by the Australian GynaecologyCollege. Pap smears look at the cervixrather than the lining of the womb, andalthough they are a routine healthmeasure, are unlikely to pick up theseproblems. Any bleeding after menopauseshould be reported and an ultrasound+/– curette arranged. Most bleedingwill not be cancer, but it’s important tohave symptoms checked out.

The effects on the eye are of uncertaincause, rare and get better when the drugis stopped. The American Academy ofOphthalmology recommends an annualexamination, but most problems havebeen reported with higher doses used inthe past. If one experienced a change invision while on Tamoxifen, it would beimportant to have an ophthalmologist(eye doctor) look at the back of the eye.

New drug availableRaloxifene, a drug which protects

against bone fracture and may reducethe risk of breast cancer is on thepharmaceutical benefits list.

The catch is that women must havesuffered an osteoporotic fracturebefore they can obtain a subsidisedprescription for the treatment.

Tamoxifen is shaped like oestrogen onthe front end, but has a stick coming outthe back. It gets into the crocodiles jaws,but prevents them from shutting fully.This blocks up the receptors so that thereal food, oestrogen, cannot get in.Tamoxifen is called a receptor blocker. Itdeprives the breast cell of a growth signaland in time it will die.

Other cells in the body with identicaloestrogen receptors to the breast will alsoget starved of oestrogen – the ovary,pituitary gland, lining of the vagina.

However, a second type of oestrogenreceptor occurs in bone, heart, veins,liver and the lining of the uterus. Thisother type has wider jaws andTamoxifen can fit in further. The jaws

by Dr Fran Boyle,Sydney medicaloncologist andclinical adviser to theNational BreastCancer Centre

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Who developed it and what has it beenused for in the past?

It was developed by ICI as a drug tostimulate ovulation (like clomiphene) inthe treatment of infertility.

Does Tamoxifen cause menopause?

In women still menstruating,Tamoxifen may interrupt the cycle,causing menopause. Some women cycleregularly on Tamoxifen, and someovulate vigorously, so contraceptionneeds to be addressed, as it is unsafe forthe foetus.

Can Tamoxifen prevent or delay arecurrence or spread of breast cancer?

Yes.

For how many years should women takeTamoxifen?

Five years has been shown to be more

effective than two in early breast cancer.Longer durations are being studied in theATLAS trial.

Are there newer drugs which work inthe same way, but which do not havethe side effects of Tamoxifen?

Alternatives to Tamoxifen areSERMs – selective oestrogen receptormodulators, e.g. Raloxifene, Toremifene.

Toremifene fits sideways into the jawsof the crocodile, blocking both types ofreceptors – this lowers the risk of clotsand endometrial cancer.

It may not therefore have the samebenefits at preventing osteoporosis andheart disease.

It is available for women with advancedbreast cancer, but has not yet beentrialled in early breast cancer, so itsability to prevent relapse is unknown.

Raloxifene has been tested in the

treatment of osteoporosis (after docu-mented fractures) in women withoutbreast cancer, and appeared to have apreventive effect similar to Tamoxifen.

It has not been tested in the treatmentof advanced breast cancer, and it has notbeen tested in early disease to preventrelapse (although it will be).

Like any drug available in this country,Raloxifene will only be subsidised by thePBS (i.e. the taxpayer) for the diseases inwhich there is good evidence of effec-tiveness, in this case the treatment (butnot prevention ) of osteoporosis.

Use for any other purpose requires theinformed consent of the patient, andpayment of the full cost.

Stay tuned, as a form a SERM may bethe ideal HRT – the benefits without therisks – so the pharmaceutical industry isinterested in these compounds!

Tamoxifen – is it for me?Most of us are offered the oestrogen-

blocking drug, Tamoxifen, as part ofour adjuvant therapy.

It is probably the most commonlyprescribed – and taken – drug forbreast cancer.

My experience with Tamoxifen wasbroadcast on ABC Radio National’sweekly program, Background Briefing, inOctober. The Beacon team asked meto share it with you as an example ofone woman’s decision-making saga.

At 49, I was diagnosed and treated forearly breast cancer – surgery, lymphnodes and radiotherapy. My surgeonthen prescribed Tamoxifen.

I was loath to start taking somethingthat would block my precious oestro-gen. I was loath to cope with the sideeffects. I was not convinced that theincremental protection was going to beworth a couple of years of swallowingthese pills. The longer term situationwas also unclear.

What to do? Where to turn for theinformation I needed to make thisdecision?

I spoke to an array of medical special-ists, whose general advice was thatTamoxifen would improve my chance

From the pathology report I tookreceptor status, tumour stage andgrade, node status, etc.

Then I trawled through the articleslooking for ones that had results thatmeant something for someone with myprofile.

Doing an amateur ‘meta-analysis’, Iconcluded that, with a chance of non-recurrence around 90%, Tamoxifenwould make a difference of about 2%for me.

To make sure I was on the right track,I sent my home-made profile andfindings to my specialists and eachconfirmed my conclusion.

Four and a half years on, I remainrecurrence free. Two per cent was notenough for me to take a drug withknown side effects, which would affectmy quality of life, and whose long-termimpact was unknown.

While I am happy I was able to makea decision by doing my own research, Ican’t help feeling that this was not theway it should have been.

Perhaps a software program could bedeveloped so that clinicians could givemore meaningful advice than ‘it willimprove your chances’.

of non-recurrence over the next fiveyears, but none could say by how much.

My gynaecologist recognised theimportance of this issue to me (andperhaps the inadequate information fordoctors and patients) and offered me aroom in his hospital library for a day to gothrough articles about the subject frommedical journals.

That was an introduction to the strangeworld of medical research-speak. It tooksome getting used to, particularly as itwas a few decades since Statistics I atuniversity!

I developed a profile of my personalindicators using the pathology reports ofmy tumour and lymph nodes. Theindicators are age, menopausal status,age at first birth and age at menarche.

Sally Crossing,NSW staterepresentative

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My Journey○

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A positive experience

At 37 years of age, I felt that Ihad it all. As a senior execu-tive with a international

consulting firm, I travelled and workedaround the world.

My envied social life kept me entirelyoccupied during my little free time.

I did not see my wonderful familyoften, due to my working hours, butalways knew they were there.

Then there was a lovely home, greatcar and financial security.

I never questioned my good health.Having been widowed 10 years earlier,

I had also met a nice man and we hadbegun dating.

On January 9, 1996, I was diagnosedwith breast cancer and life took on anew meaning.

I had gone to my GP for a pap smear,which I hadn’t done for more than threeyears. While I was there, she insisted onperforming a breast examination.

Having not really taken much notice ofsuch things, I was surprised when shetold me she could feel a lump.

The doctor made the necessaryarrangements for an investigation andthat revealed two more suspicious lumps.

Further examination found the smallestof the three lumps was a malignanttumour, so a lumpectomy was performed.

Having never been closely exposed toanyone with cancer, I thought this wasjust a hiccup in my life. I would be inhospital for a couple of days and then itwould be back to the life I loved.

The day after the lumpectomy, mybreast surgeon told me the cancer hadspread to my lymph nodes. She wantedme to undertake chemotherapy andradiotherapy treatments.

My world fell apart. I immediatelythought about the major changes thiswould cause in my ‘ideal’ life – losing myhair and having to end my new relation-ship so I could focus on these events.

I pulled myself together, with thesupport of family and friends, and set

about finding enough information toensure I managed this situation and itdidn’t manage me.

I had excellent guidance from mydoctors, breast care nurses and supportgroup. This helped me make informeddecisions about my treatment and howto manage their impact on my life.

I have been blessed with a positiveattitude and, as such, worked to makewhat appeared a major catastrophe intoa positive experience.

That was nearly four years ago. Now, Ican say life doesn’t get too much better.

There is a balance in my life I neverthought possible. I still travel the world,but now it is on holidays. I have anenviable relationship with my family andfriends, whom I see as much as possible.My health is precious and no longertaken for granted.

I am still a senior executive with amajor consulting organisation, but haveswitched to one which has ‘balancedfamily life’ as a core value.

My social life is wonderful, but bal-anced with enjoyable quiet time at mynew home, which I share with thewonderful man I was dating at the timeof my diagnosis.

He was a pillar of strength and support.We were married in March 1998.

Today, I am on the board of the BreastCancer Network Australia and the Fieldof Women organising committee.

It gives me a great deal of pleasure toshare my experience with others embark-ing on this life-changing journey.

AuntChrissie

The mastectomy was radical.Being a clever seamstress,she designed clothes andsometimes, surprisinglyto her students, one breastbecame a makeshift pincushion.

We spent the summerat her beach house.She insisted on midnight swims,car headlights illuminatingthe water, but not exposingher lopsided body.

Our love did not seethe scars or hidden pain.Instead we wanted to enjoyher crazy zest for life.Hear her loud laughterbounce over the waves.

We convinced her thatthe final experimentshould see the light of day.Third time lucky, she saidas the empty cupdid not overflow.

The foam one hadfloated fancifully away,another had collapsed.The one filled with riceexpanded and sank. Andwe had laughed with her.

The mastectomy was radicalbut her humanness did notdisappear with the cancer.And memories ofher homemade prosthesesstill make us laugh.

– Mairi NeilMairi Neil is the co-ordinator of the

Mordialloc Writers’ Group in Victoria.This poem, about Mairi’s aunt, who

experienced breast cancer in 1962, has wonan Anti-Cancer Council of Victoria’sDaffodil Day Literary Award.

It is also part of an anthology, ‘Writers ByThe Bay’, published by the MordiallocWriters’ Group.

Karen Russell,BCNA boardmember

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Letters to the Editor

Breast cancer is a major concern forAustralian women of all cultural back-grounds and skin colours.

The most successful Australian BreastCancer Day lunch ever held in theShoalhaven area was organised byWaminda, the South Coast Women’sHealth and Welfare Aboriginal Corpora-tion, and held at the Aboriginal CulturalCentre, Nowra NSW.

More than 180 women were enter-tained by Laddy Tirnrey’s Aboriginaldancers from Jervis Bay, accompanied bydidgeridoo and clap sticks. YoungAboriginal singer, Michelle Curtis, alsocharmed the audience.

The guest speaker was Debbie Cain, abreast cancer survivor and servicemanager of Wat-nitida.

She spoke about her journey withbreast cancer and finished by encourag-ing all Koori women, as well as whitewomen, to have regular mammograms.

The day was attended by a group oflocal Koori Elders, who threw theirsupport behind the venture.

We appreciate hearing from mem-bers, these are excerpts from letters wehave received.

“ … all of you who work on thisnewsletter and have input into it getmy hearty THANKS!’

“It’s great for those of us who liveoutside the capital cities to learn whatis happening to support breast cancer.”

“Thank you for your wonderfulnewsletter.”

“Love The Beacon – it just keepsgetting better and better.”

“What a wonderful, tangible support toall of us survivors fighting to live with joyand hope.”

“I live in a rural area and it is great tohave reliable, up-to-date information ontrials and current research.”

“Many thanks for the publication youput out – it’s of great interest.”

“At last, I do not feel like the onlywoman in the world ever to have had amastectomy.”

“… it is interesting to read stories abouthope, support, survival, etc.”

Your feedback on The Beacon

A recent issue raised the debate aboutbone metastases. Internationally, this isan active area of research.

What allows some breast cancer cells togrow in bone and not elsewhere is beingunravelled. It seems to be due to theirability to produce a hormone-likeparathyroid hormone (PTH).

This is usually only made by cells in theparathyroid glands in the neck, and onlyif we do not take in enough calcium.

To keep calcium constant in the blood,this hormone is released and stimulatescells in bone called osteoclasts to chewup bone matrix and release calcium intothe blood. The calcium goes up, theparathyroid cells sense it, the hormonesswitch off and all is well again.

All cells have the potential to make this

The Aboriginal and Torres StraitIslander Commission will provide fundsthrough Aboriginal Women’s Grants tomake this an on-going event.

– Elizabeth Joyce, Community Devel-opment Officer, NSW Cancer Council

“Thank you for The Beacon, as I livein a small town, it is a hand reachingout to me.”

“Keep up the good work.”“It is great to receive my copy of

The Beacon – it always has informationwhich is very helpful.”

“… I must tell you what a pleasureit was for me to find out aboutThe Beacon, because I felt so aloneuntil I did.”

“It seems to be getting more interest-ing with each issue.”

hormone if they stop controlling theirgenes properly.

It seems that breast cancer cells thatcan make PTH are able to grow better inbone. They release PTH and it stimu-lates osteoclasts to chew a hole for themto live in. This may also make calcium goup in the blood, which makes you feelyuk.

For a long time, we have been treatinghigh calcium levels in people with cancerwith drugs called bisphosphonates (e.g.Aredia, Bonefos). These work byparalysing the osteoclasts.

It has been shown that if these drugsare given regularly to women with bonemetastases, they help stop bone damage,reducing the risk of fractures, improvingpain control and improving healing.

All of these things improve quality oflife, and the drugs have few serious sideeffects (compared with chemotherapy!).

They are expensive, but Aredia issubsidised by the CommonwealthGovernment through the S100 schemeand should be freely available to anyonewith bone metastases from breast cancer.

It is administered monthly through adrip over a few hours and can be safelygiven with chemotherapy.

These drugs are of interest to thegeneral community because theyprevent osteoporosis, so science is activelyaddressing this area from several angles.

Stay tuned for new developments.– Fran Boyle, medical oncologist

Sandra Welsh,Debbie Cain andLorraine Ardler atthe Women’sBusiness Luncheonin Nowra, NSW.

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In the nextissue ...• Clinical trialsSend us your thoughts!

THE BEACONThe Beacon is the newsletter of theBreast Cancer Network Australia.Editor: Lyn SwinburneLayout: SubstitutionYour comments and items for thenext newsletter are welcome. Sendthem to PO Box 4082, AuburnSouth, 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, Victoria 3122

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

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

........................................................................................................................

State: ............. Postcode: .............. Phone: ( ) ............................................

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

SeekingShelter

UPCOMING EVENTS

March 30-31: Second National Breast Care Nurses’ Conference, ‘Breast CancerCare into the Millennium’, Sydney Hilton.Contact: Minh Arvin, Breast Cancer Interest Group, Concord Hospital, Concord, NSW 2139,(02) 9767 5000.

April 7-9: Third Australasian Lymphology Association Conference, ‘Oedema –future directions’ (includes public seminar on lymphoedema on April 8), CarltonCrest, Melbourne.Contact: (03) 9419 6199.

April 29: Breast Cancer Action Group (BCAG) Victoria general meeting, 2.30pm,Auburn Primary School.This meeting will discuss lymphoedema and issues coming from the lymphoedemasummit in April.Contact: Sue Lockwood (03) 9878 0736.

April 30: BCAG NSW general meeting, 3pm, YWCA, Sydney.Contact: Sally Crossing (02) 9436 1755.

June 24: BCAG Victoria general meeting.Contact: Sue Lockwood (03) 9878 0736.

June 24 or 25 (to be confirmed): BCAG NSW joint meeting with the NationalBreast Cancer Centre.This will be an opportunity to review the progress since the 1998 Canberraconference, to update our Making a Difference report, to hear the latest develop-ments in breast cancer treatment and research, and about NBCC activities.Contact: Sally Crossing (02) 9436 1755.

September 3-7: Fifth World Congress of Psycho-Oncology, ‘A New Millennium, ANew Momentum’, Melbourne Convention Centre.Contact: PO Box 1127, Sandringham, Victoria 3191.

• To include events in The Beacon’s winter issue (June, July, August) pleasesubmit brief notices before the end of April.

Breast Cancer Network Australiawelcomes these groups under itsumbrella:• Mount Gambier Breast Cancer

Support Group (SA); and• Ballarat Breast Cancer Support

Group (Vic).Discuss the Network with your

group and let us know if we cancreate another link. There is strengthin numbers!

Contact: Gil Paulsen, PO Box 4082,Auburn South, Victoria 3122, phone(03) 9805 2500 or [email protected]

Congratulations to Network members

Cancer summitIn February, Network co-ordinator,

Lyn Swinburne, represented Austral-ians with cancer at the WorldSummit Against Cancer in France.

She was to be one of more than 100leaders of governments, cancerorganisations, researchers, and patientsupport and advocacy groups, to signthe Charter of Paris Against Cancer,pledging to fight cancer and improvethe lives of people with cancer.

To read the Charter andhave a chance to sign it, visitwww.CharterAgainstCancer.org

Sue Smith, from Generations Produc-tions, has won an award for the videowhich recorded the first Field of Womenin Canberra during 1998.

She won a bronze award for educationand training videos from the AustralianVideo Producers’ Association.

Assoc. Prof. Linda Reaby, breastcancer survivor and Head of the Schoolof Nursing, Canberra University, hasbeen awarded the honour of EminentScientist of the Year by the Interna-tional Research Promotion Council(Asian/Pacific Chapter).