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SUMMER 2004 NEWSLETTER DEAR READERS,

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SUMMER 2004 NEWSLETTER DEAR READERS, Powered By Docstoc
					                                                 SUMMER 2004 NEWSLETTER




                                                kConFab
                                                Kathleen Cuningham Foundation CONsortium for research into FAmilial Breast Cancer



      Published by kConFab, Peter MacCallum Cancer Centre, St Andrews Place, East Melbourne 3002, www.kconfab.org, phone (03) 9656 1542




    DEAR READERS,

    It may seem that you only just               have three approved research projects        impressed with our achievements
    received a newsletter from us, but           that will use the frozen breast tumours,     in Australia in building up kConFab
    we have now decided to send them             and one that will need to use frozen         from scratch to what is now probably
    every six months because of the              ovarian tumours. In addition, we             the best resource in the world for
    positive feedback we received after          anticipate that we will receive many         research into familial breast cancer.
    the last newsletter sent out in May.         requests to use the tissue collected         There are now 7,667 participants in
                                                 from prophylactic breast and ovarian         kConFab from 855 families. This could
    Some kConFab participants asked              surgeries, aimed at working out the          not have been done without your help
    us to keep the issue of collecting fresh     early steps that change a normal             and continued participation. We realise
    surgical tissue on the front page of the     cell to a cancer cell. Because of the        that this may be an imposition on your
    newsletter so that they remember to          difficulty of collecting material straight   time, and we are very grateful. We
    let us know if they are having breast        from surgery, and the restrictions to        have no doubt that the research that
    or ovarian surgery. There is no doubt        collecting biological specimens that         stems from kConFab will improve the
    that these newsletters do serve as           are being imposed in many countries          outcome for women, and men, from
    a reminder as we always get several          overseas, these fresh tissue collections     families at high risk of developing
    phone calls soon after they are mailed.      are probably the most important of           breast cancer, and we hope that you
    So, please remember if you are having        all the material that kConFab collects.      share this vision.
    surgery and would like to donate tissue      We have included with this newsletter
    to kConFab, phone your local kConFab         a fridge magnet with a 1800 221 894          Sincerely,
    nurse (or Heather Thorne 03 9656 1542)       contact number to make contacting            Georgia Chenevix-Trench
    before the surgery so that we can make       us easier.                                   Chair, kConFab Executive Committee
    arrangements with the local surgeon
    and pathologist to collect the tissue        In August we had our 7th kConFab
    at the time of the operation. This allows    Annual Conference in Queensland,
    the tissue to be frozen, which preserves     and as usual invited several world
    it much better than the standard             leaders in familial breast and ovarian
    pathology storage protocols. We now          cancer research. They were extremely




1
    USE OF TISSUE                              THE kConFab CLINICAL FOLLOW
    DONATED TO                                 UP STUDY HAS BEEN REFUNDED
    kConFab
                                               In November last year the Clinical         questionnaire will contain a few
                                               Follow-Up Project was refunded             new questions regarding the use
    We want to reassure our participants       by the NHMRC for a further three           of hormonal contraception, general
    that kConFab will only have access to      years. This means we are able              medications and complementary
    any ‘left-over’ tissue. When kConFab       to continue sending questionnaires         and alternative therapies. It will
    participants notify us about planned       to kConFab participants, in order          also ask about any new cancers
    surgery, the kConFab team always           to update and collect information          diagnosed, surgery performed and
    takes the following steps:                 regarding your health and lifestyle.       changes of address. Even if your
                                                                                          details have not changed during the
    • We contact the surgeon and the           If you have not received a follow          last 3 years, it is still important to
      pathologist involved with your           up questionnaire before, you               complete the questionnaire, as this
      surgery and discuss the possibility      should expect to hear from us              information is just as valuable to us.
      of kConFab having any tissue that        approximately three years after you
      is left over after the pathologist has   were first enrolled into kConFab. The      It is difficult to design questions
      examined it.                             questionnaire takes approximately          to suit everyone, so please don’t
                                               20 minutes to complete and can             hesitate to contact us if you are
    • We supply the surgeon and                be posted back to us in the self-          having any problems completing
      pathologist with a copy of your          addressed envelope provided.               your questionnaire. Our toll free
      signed kConFab consent form so           We understand the questionnaire            number is 1800 111 581. This line
      that they can be confident that you      can arrive at a busy time in your life,    is manned during normal office
      have consented to our project and        so it is OK if you need to wait a few      hours and 5 nights a week until
      have given permission for us to          weeks before filling it in – although it   7pm (EST). We now have four
      access your surgical material.           is helpful if you can let us know. For     research assistants working on the
                                               the integrity and quality of the study     follow up study including our
    • We attend theatre on the day             it is important to follow up as many       newest member Joel Murray. Joel
      of surgery.                              participants as possible in this way,      brings a male perspective to our
                                               but if you prefer not to complete the      research team.
    • We liaise with the pathologist           questionnaire you can withdraw from
      who takes all of the tissue that         the study at any time.                     Thank you again for taking the time
      is required to make an accurate                                                     to fill in your questionnaire. Please let
      diagnosis on the tissue removed.         Thank you to everyone who has              us know if you change your contact
                                               completed a questionnaire. We              details. Your information is of great
    • Only then does kConFab obtain            will be contacting some of you             value to our ongoing research.
      any additional tissue for its            again shortly with a second round
      research project.                        questionnaire, as it will have been        Prue Weideman
                                               six years since you were first             Clinical Follow up Coordinator
    • kConFab does not take any                interviewed. The second round              Toll Free number 1800 111 581
      tissue until the Pathologist has
      taken everything needed for
      diagnostic purposes.
                                               Clinical Follow Up Team, left to right: Prue Weideman,
    • On some occasions we do not              Joel Murray, Joanne McKinley.
      collect any tissue as there is not
      enough left over, for example if a
      biopsy is taken from a small lump.




2
       Top: Dr Graeme Suthers (SA Clinical Genetic Services           Left to right:
       Adelaide), Prof Bruce Ponder (Canbridge UK).                   Meryl Altree (kConFab SA research nurse),
                                                                      Prof Joe Sambrook (Founding Director, kConFab).
       Bottom, left to right: kConFab research nurses
       Anna Nash (WA), Helen Conlon (NSW),
       Beth Spear (VIC).




    kConFab PATHOLOGY REVIEW
    By kConFab pathologist Maurice Loughrey



                                                ‘BRCAX’ genes) are probably more         women with a strong family history
                                                common than mutations in BRCA1           of breast cancer. Furthermore, if the
                                                and BRCA2 and may confer a lower         BRCAX group can be subdivided into
                                                risk of breast cancer.                   smaller pathologically similar groups
                                                                                         more likely to represent a common
                                                The current study involves examination   underlying genetic cause, this may
                                                by a pathologist of the microscopic      assist conventional genetic laboratory
                                                features of breast cancers from          techniques in the identification of more
                                                BRCAX families, in the hope of           genes that may be involved in the
                                                identifying a pattern or patterns        development of breast cancer.
                                                that would establish a ‘fingerprint’
                                                of BRCAX tumours. Similar studies        Only a few studies looking at the
    A large study is underway looking           looking at the pathology of breast       pathology of BRCAX breast cancers
    at the pathological features of breast      cancers in individuals who have          have to date been reported and these
    cancers arising in families lacking         a BRCA1 mutation have revealed           have been on a small scale, with less
    mutations (faults) in BRCA1 and             a distinctive pattern when the cells     than 100 cases included. No strong
    BRCA2, or the so-called BRCAX               are reviewed under the microscope,       patterns have emerged. As the BRCAX
    families. The major breast cancer           different from most sporadic tumours     group is likely to represent multiple
    predisposition genes BRCA1 and              and from BRCA2 associated cases.         smaller groups, reflecting different
    BRCA2 were identified in the early          This makes it theoretically possible     underlying genetic causes, a large
    1990s and mutations in these genes          to predict possible BRCA1 mutation       scale study is more likely to obtain
    account for only a minority of breast       status from routine pathological         significant results.
    cancer families. Despite intensive          examination of a breast cancer using
    efforts since then, identification of the   a standard microscope. Similarly, if     The current kConFab study aims to
    genetic basis underlying the remainder      a pattern or patterns emerge within      study tissue from participants from
    of breast cancer families has had           the BRCAX group of tumours, features     400 BRCAX families. Preliminary results
    limited success. Mutations (faults) in      may be identified which allow us to      should be available in early 2005.
    these unidentified genes (so-called         predict the mutation carrier status in
3
    TO KNOW OR NOT TO KNOW?
    By Tanya Wilson


    When I was 35 I went to my GP of            At the time of my mastectomy and 12        of the young women’s breast cancer
    many years with a breast lump the           doses of chemotherapy, I was a single      support group I’d founded 4 years
    size of a ten cent piece. He knew my        mother with daughters aged 5 and 7         earlier. It was definitely easier dealing
    aunt developed breast cancer in her         and I’m an only child. I had to hide my    with my diagnosis this time because
    40’s but still assured me “it was           fears and feelings from my daughters       of all the support, experience and
    nothing to worry about” without             and my mother who was terrified I          knowledge I could get and share with
    ordering any tests. I never thought         would die like her sister.                 others in the group. Some of these
    to seek a second opinion because I                                                     women had a breast cancer gene
    didn’t feel sick, I wasn’t tired and this   For 6 months the chemotherapy was          mutation and understood first hand
    man had looked after me for over 20         injected undiluted into my arm at my       about the guilt, worry and the fear
    years. I trusted his opinion. Months        surgeon’s office, with no opportunities    I was feeling.
    later I felt a lump under my arm and        to meet other young women enduring
    went to the local GP who found I had        the same life crisis and no one to offer   Over the next 13 months I had a
    breast cancer and it had spread to          me hope and support.                       mastectomy, 8 doses of chemotherapy,
    the lymph nodes under my arm.                                                          30 doses of radiotherapy, my ovaries
                                                Eventually I was referred to an            removed and bi-lateral breast
                                                oncologist who suggested I be tested       reconstruction. Had I known about my
                                                for a breast cancer gene mutation.         gene mutation before I found my first
                                                Both my mother and grandmother             lump, I know I would have been treated
                                                hadn’t had breast cancer but mum’s 2       differently by health professionals and
                                                cousins and only sister had developed      I would also have taken preventative
                                                breast or ovarian cancer in their 40’s     measures to reduce my risk of
                                                and all were deceased. Thinking I was      developing breast cancer, but there is
                                                helping research and never imagining       also the psychological side to knowing
                                                I would have a mutation, I consented       and I would have had to live with that
                                                and was told my test results should        too. I truly believe that if I’d known in
                                                take 12 – 18 months. It took 3 1/2 years   my 20’s that my life now would be
                                                to find out I had a BRCA1 gene fault       completely different but not necessarily
                                                (mutation). The news hit me hard. The      better, I may have made different life
                                                chances of developing cancer in my         decisions. I’m still yet to decide when
                                                remaining breast and ovaries were not      to tell my daughters because I know
                                                my only concern. I was worried             that the information I need to share
                                                my daughters may have inherited the        with them may mean they have to
                                                gene mutation from me and what was         make some painful decisions. I hope
                                                the best way to tell my mother and         research like kConFab will advance our
                                                cousins about the result, if they          understanding on how best to manage
                                                wanted to know?                            and clinically treat high risk families
                                                                                           which will make the decision process
                                                I discussed prophylactic                   a lot easier for future generations.
                                                (preventative) mastectomy with my
                                                oncologist and surgeon. As I now           The Young Ones breast cancer
                                                had a cyst in the other breast and a       support group Victoria for women
                                                swollen internal gland. Thankfully the     under 45.
                                                surgeon knew it was cancer, that it
                                                had spread to my internal nodes and        Contact Tanya Wilson 041 123 5964.
                                                took immediate action.                     tanya_wilson@optusnet.com.au
                                                                                           http://members.optusnet.com.au/~
                                                I now had a fiancé, 5 kids, I was          tanya_wilson/html/homePage.htm
                                                working, we’d just moved further out
                                                of Melbourne and I was co-ordinater



4
    kConFab PSYCHOSOCIAL STUDY
                                                 request completion of a questionnaire       up questionnaires and interviews
                                                 and/or a telephone interview. The           with women who first participated
                                                 questionnaire usually takes around          in the study 3 years ago. So, if it has
                                                 15 minutes, and asks about emotional        been some time since you did the
                                                 responses, thoughts and feelings, and       questionnaire and interview, we may
                                                 social support. The interview usually       be re-contacting you soon to check
                                                 takes around 45 minutes, and focuses        whether you may be willing to do
                                                 on recent stress or change. We work         them again! Finally, we are planning
                                                 flexible hours, and are happy to            to do a smaller study focusing on the
                                                 schedule the interview around               experiences of women who have not
                                                 participants’ family and work               had cancer, but who have decided to
                                                 commitments, and even contact               have prophylactic surgery (i.e. breast
    Left to right: Judy Wilson, Nicky            people who are living overseas.             and/or ovaries removed to reduce
    Howard, Jenny McKenzie, Georgina                                                         the risk of getting cancer). If you have
    Banks and Melanie Price.                     A number of findings from several           had this type of surgery, you may hear
                                                 smaller studies that have been              from us again to request completion
                                                 conducted as part of this research          of a survey asking about how you
    The Psychosocial Study is examining          have already been published. For            reached the decision to have the
    the role of stress, social support and       instance, one of our recently published     surgery, and how it has affected
    common psychological states such             studies found that women who are at         your life three years later.
    as anxiety and depression in the             increased risk of breast cancer do not,
    development of breast cancer.                overall, report greater psychological       We are very grateful to all of the
    The study is being conducted from            distress (such as anxiety and               women who have participated in the
    the Department of Psychological              depression) than women who are              Psychosocial Study so far – thank
    Medicine at the Royal North Shore            not at increased risk. Another survey       you for so generously giving us your
    Hospital, Sydney, and is funded by           conducted as part of the Psychosocial       time for this research. Please do not
    the National Health and Medical              Study examined the impact on                hesitate to call our toll free numbers
    Research Council of Australia.               kConFab women of receiving genetic          below if you have any questions or
                                                 mutation results. This study found that     issues relating to the study that you
    The research is based on a                   although many women experienced             would like to discuss. Also, please
    common belief that stress and other          distress (when mutation-positive)           make sure you notify us of any
    psychosocial factors may affect the          or guilt (when mutation-negative)           change of address or contact details.
    risk of developing cancer, in particular     when they first learned of their results,
    breast cancer. It is not clear from          these unpleasant feelings seemed            Judy Wilson
    existing research whether these              to diminish over time. A number of          Psychosocial Study Coordinator
    factors can and do clinically alter          benefits of learning their results were     1800 772 838
    cancer risk – and if so, over what sort      also identified by many participants,       (Toll-free call Australia)
    of time frame. These are some of the         such as feelings of relief and reduced      0800 888 340
    questions we aim to answer, and this         anxiety among mutation-negative             (Toll-free call New Zealand)
    may result in identifying specific risk      women, and reduced uncertainty
    factors that may be modified to              and a greater sense of control among
    reduce cancer risk.                          mutation-positive women.

    Since mid-2001, approximately 1600           We are continuing to recruit both
    kConFab women have taken part in             new and existing kConFab women
    the Psychosocial Study. As you may           who do not have cancer, with the aim
    know, this is a long-term study, and we      of recruiting at least 2000 participants.
    will contact participants a total of three   Our largest achievement is that we
    times, at three-yearly intervals, to         have started our first round of follow-




5
    A NEW RESEARCH STUDY

    kConFab STUDY OF MEN FROM
    HIGH RISK BREAST CANCER FAMILIES
    Elizabeth Lobb, WA Centre for Cancer and Palliative Care, Perth, Western Australia

                                                  This study will help us understand         the faulty gene if a parent, brother or
                                                  what it means to a man to belong to        sister is a carrier of the faulty gene. If
                                                  a high risk breast cancer family, and      they inherit the faulty gene they have
                                                  will assist in the development of          a 50/50 chance of passing it on to
                                                  genetic counselling models that are        their sons or daughters.
                                                  sensitive to men’s needs. We wish
                                                  to understand men’s experiences of         All men without cancer, and who are
                                                  being part of a high risk breast cancer    part of a high risk breast cancer family
                                                  family, their attitudes towards being      (except men who are at low risk, or
                                                  at risk, their knowledge of breast         partners of women at high risk) are
                                                  cancer genetics and any anxiety            invited to participate.
                                                  or depression they may experience
                                                  in coping with this family history.        There are two stages to the study.
                                                                                             Stage 1 involves a telephone interview
                                                  This research is funded by the             with men who have been to a familial
                                                  National Health & Medical Research         cancer clinic and is currently underway.
                                                  Council because research in the past
                                                  has mainly focussed on women in            Stage 2 involves completing a
                                                  high risk breast cancer families. Also,    questionnaire. A detailed information
                                                  fewer men than women come forward          and consent form will be mailed in
                                                  for predictive BRCA1/2 testing and         January, 2005. If you feel you are
                                                  perhaps misinformation about the           unable to help with Stage 2 of the
                                                  cancer risks to men explains why men       study, we would be most grateful if
                                                  are often under-represented in familial    you could return the reply-paid “opt
                                                  cancer clinics.                            out card”. If we don’t receive the card
                                                                                             we will mail out the questionnaire that
                                                  Although the risk of cancer in             takes about 20 minutes to complete.
                                                  males carrying a breast cancer gene
                                                  mutation is lower than for women with      For further information please
                                                  the same fault, these men may be at        contact: Liz Lobb on (08) 9273 8728
                                                  higher risk of developing cancer than      or the toll free number 1800 993311
                                                  for men in the general population.         or e.lobb@ecu.edu.au
                                                  They have a 50/50 chance of carrying




     MEN – WHAT USE ARE THEY TO kConFab? – LOTS!
     • By studying the males in the family            breast cancer families and this can        cancer than the general population.
       it helps us to track the disease               be isolating for them. Their being         Understanding what that risk is,
       through families. Even though males            included helps them, their daughters       and for which cancers, is likely to
       rarely develop breast cancer they              and the study… A win win situation!        be helpful in planning appropriate
       have a 50/50 chance of carrying the                                                       screening. Looking at how the genes
       faulty gene. If they inherit it they can    • Although the risk of cancer in              function in non-breast/ovarian tissue
       pass it on to their daughters.                males carrying a breast cancer gene         may help us understand their function.
                                                     mutation is lower than that of women
     • Males often are left out of the family        with the same fault, men may be at
6      discussions about genetic testing in          a somewhat higher risk of developing
    MESSAGES FROM THE kConFab TEAM
    To keep kConFab running smoothly,              some family members may already       • It is very important that we are
    we would greatly appreciate if you             know their own genetic testing          notified of any new cases of cancer
    would remember the following:                  results, having attended a Family       in your family. Research relies on
                                                   Cancer Clinic. However, we know         accurate and up-to date information
    • Because information is provided              that others will not yet have been      about the cancers in each of our
      to our participants by mail, it is           to such a clinic. The notification      participating families. We appreciate
      very important to keep your contact          letter will provide details so that     your help with this.
      details up to date. We may even              all of those who are interested in
      ask you to send us the name of               having a clinical genetic test can    • Please notify kConFab if, at any
      another contact person, in case we           do so with the support of a Family      time, you prefer not to have more
      are unable to find you. Sometimes            Cancer Clinic. Some family              contact with our study.
      we need to contact family                    members may have told us that
      members when a gene fault has                they do not wish to be notified if    • Please tell your research nurse
      been identified that is relevant for         kConFab finds a gene mutation           if you change your address.
      your family. In this case, we write          in their family. These people will
      notification letters to all participants     not receive a letter.                 How can interested
      who indicated a wish to be
      informed about results of genetic          • Please remember that fresh tissue     families join kConFab?
      testing for the family. We do not            specimens obtained at surgery are     Ring any of the research nurses or
      supply individual research results,          extremely valuable for research.      the kConFab manager listed on the
      as our research testing is often             Please ring your local kConFab        next page, or, view our home page
      done under conditions less                   research nurse to inform her of       to determine if your family meets our
      stringent than those needed for              any surgery planned for treatment     selection criteria: http://www.kconfab.org
      a clinical test. We understand that          or prevention.                        /epidemiology/1eligibility.asp




    BREAST CANCER INTEREST GROUPS – USEFUL CONTACTS
    DRAGONS ABREAST AUSTRALIA                    We invite all breast cancer survivors    Fourteen women living in diverse
    UNDER THE UMBRELLA OF BREAST                 and supporters to come and               areas of rural and remote Australia
    CANCER NETWORK AUSTRALIA                     experience the magic that is part of     make up the Rural and Remote
    Who are we?                                  our unique team – not necessarily as     Working Party, which meets monthly
    We are a group of breast cancer              a paddler, there are many tasks that     via teleconference. All members have
    survivors of various ages from a great       we welcome assistance with!              direct ‘grass root’ links to women from
    variety of backgrounds, athletic abilities                                            rural/remote Australia through support
    and interests.                               http://www.dragonsabreast.com.au         networks, advocacy groups and
                                                 or ring National co-ordinator:           representing women on committees
    High on our list of priorities is having     Michelle Hanton Tel (08) 8941 8923       throughout Australia.
    fun, trying new things, meeting
    interesting people and being involved        BREAST CANCER NETWORK                    The Rural and Remote Working Party
    in a challenging, physical activity whilst   AUSTRALIA’S RURAL AND                    provides women living in rural and
    promoting breast cancer awareness.           REMOTE WORKING PARTY                     remote parts of Australia with a powerful
                                                 – BRIDGING THE DISTANCE                  voice, support and information. It strives
    We are under the umbrella of the             At Breast Cancer Network Australia’s     to identify and prioritise relevant issues,
    Breast Cancer Network, Australia – the       National Summit in February 2002,        develop achievable, sustainable
    national voice of Australians personally     a group of women from rural and          strategies that contribute to improving
    affected by breast cancer.                   remote parts of Australia met to         the support, information and care of
                                                 ‘network’ and discuss issues relevant    women diagnosed with breast cancer
    Dragons Abreast provides a “face”            to them. A number of unmet needs         despite geographical location.
    for the breast cancer statistics whilst      were identified and they agreed that
    spreading the message of breast              further discussion and exploration       For further details regarding the
    cancer awareness through participation       was needed. From frustration came        Rural and Remote Working Party
    in the wonderful and strenuous sport of      determination and the formation of       contact BCNA on 1800 500 258.
    dragon boat racing.                          the Rural and Remote Working Party
7                                                driven by consumers.
    BREAKING NEWS
    Realising the importance of tissue                            researchers working in the health and                    Hospital and Q.I.M.R. are members,
    collection and cell banks, the                                medical field will benefit from being                    to collect, process and disseminate
    Australian Government will provide                            able to get access to stored tissue and                  tumour tissue for research.
    more than $14.2 million to establish or                       cell samples or to national databases.
    extend eight national research facilities,                                                                             Other successful applicants to receive
    including tissue and cell banks, in New                       Building on the important Australasian                   funding were the Australian Twin
    South Wales, Victoria, Queensland,                            Biospecimen Network at the Peter                         Registry, National Network of Brain
    Western Australia and the Australian                          MacCallum Cancer Centre in Victoria                      Banks, Cell Bank Australia, Breast
    Capital Territory.                                            where kConFab has its home office                        Cancer Biospecimen Resource,
                                                                  and processing laboratories, more                        Australian Prostate Cancer Collaboration
    “The Scheme is designed to assist                             than $1.7 million over five years will                   (APCC) Bio-Resource. National
    health and medical researchers by                             establish an Australasian Biospecimen                    Population-based Genetic Epidemiology,
    providing support for specific facilities                     Network-Oncology, of which kConFab,                      Biospecimen and Bioinformatic
    and activities that will enhance the                          WA Research Tissue Network, Peter                        Resource, Australian Phenome Bank.
    national research effort,” the Health                         MacCallum Tissue Bank, Westmead
    Minister, Mr Abbott said. “All Australian                     Hospital and Westmead Children’s




    COLLABORATING FAMILY CANCER CENTRES
    Melbourne                             Sydney                            The John Hunter Hospital               Perth                                   Wellington – New Zealand
    Familial Cancer Centre                Familial Cancer Service           Hunter Valley                          Genetic Services of Western Australia   Central and Southern Regional
    Peter MacCallum Cancer Institute      Westmead Hospital                 Contact: Dr Tracey Dudding             King Edward Memorial Hospital           Genetics Services
    East Melbourne                        Westmead                          Phone: 02 4985 3132                    Subiaco                                 Wellington Hospital
    Contact: Ms Mary-Anne Young           Contact: Assoc. Prof. Judy Kirk   KConFab research nurse:                Contact: Dr Ian Walpole                 Wellington South
    Phone: 03 9656 1199                   Phone: 02 9845 6947               Helen Conlon                           or Professor Jack Goldblatt             Contact: Dr Alexa Kidd
    kConFab research nurse: Beth Spear    kConFab research nurse:           Phone: 02 9382 2607                    Phone: 08 9340 1525                     Phone: 64 4 385 5310
    Phone: 03 9656 1903                   Monique Dyson                                                            kConFab research nurse: Anna Nash       kConFab research nurse: Jane Wylie
                                          Phone: 02 9845 6845               Brisbane                               Phone: 08 9340 1610                     Phone International: 64 9 307 7232
    Royal Melbourne Hospital                                                Queensland Clinical Genetics Service                                           NZ local call: 0800 476 123
    Familial Cancer Centre                Prince of Wales Hospital          Royal Children’s Hospital              Tasmania
    Parkville                             Hereditary Cancer Clinic          Bramston Terrace                       The Royal Hobart Hospital               kConFab Co-ordinator
    Contact: Dr Geoffrey Lindeman         Randwick                          Herston                                The Lauceston General Hospital          Heather Thorne
    Phone: 03 9342 7151                   Contact: Dr Kathy Tucker          Contact: Dr Michael Gattas             The North West Regional Hospital,       Peter MacCallum Cancer Centre
    kConFab research nurse: Kate Pope     Phone: 02 9382 2577               Phone: 07 3253 1686                    Bernie                                  Research Division
    Phone: 03 9342 4257                   kConFab research nurse:           kConFab research nurse:                Contact: Dr David Amor                  Phone: 03 9656 1542
                                          Helen Conlon                      Vicki Fennelly                         c/o VCGS Royal Children’s Hospital      Email: heather.thorne@petermac.org
    Victorian Clinical Genetics Service   Phone: 02 9382 2607               Phone: 07 3636 5200                    Melbourne
    The Murdoch Institute                                                                                          Phone: 03 8341 6300
    Royal Children’s Hospital             St George Community Hospital      Adelaide                               or Dr Jo Burke
    Parkville                             Hereditary Cancer Clinic          South Australian Clinical Genetics     Royal Hobart Hospital
    Contact: Dr Mac Gardner               Kogarah                           Services                               Phone: 03 6222 8296
    Phone: 03 8341 6293                   Contact: Dr Kathy Tucker          Women’s and Children’s Hospital        kConFab research nurse: Kate Pope
    kConFab research nurse: Kate Pope     Phone: 02 9382 2577               North Adelaide                         Phone: 03 9342 4257
    Phone: 03 9342 4257                   kConFab research nurse:           Contact: Dr Graeme Suthers
                                          Helen Conlon                      Phone: 08 8161 6995                    Auckland – New Zealand
    Victorian Clinical Genetics Service   Phone: 02 9382 2607               kConFab research nurse: Meryl Altree   Northern Regional Genetics Services
    Monash Medical Centre                                                   Phone: 08 8161 6821                    Auckland Hospital
    Clayton                               St Vincent’s Hospital             or Susan Schulz 08 8161 6393           Auckland
    Contact: Ms Tarli Hall                Family Cancer Clinic                                                     Contact: Dr Ingrid Winship
    Phone: 03 9594 2026                   Darlinghurst                                                             Phone: 64 9 3737599 ext 3768
    kConFab research nurse: Beth Spear    Contact: Dr Robyn Ward                                                   kConFab research nurse: Jane Wylie
    Phone: 03 9656 1903                   or Ms Rachel Williams                                                    Phone International: 64 9 307 7232
                                          Phone: 02 8382 3395                                                      NZ local call: 0800 476 123
                                          kConFab research nurse:
                                          Monique Dyson
                                          Phone: 02 9845 6845




                                                                     USEFUL WWW SITES
                                                                     KConFab – www.kconfab.org
                                                                     National Breast Cancer Foundation – www.nbcf.org.au
                                                                     Breast Cancer Network Australia – www.bcna.org.au
                                                                     Breast Cancer Research Association Inc – www.breastcancer.asn.au



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Description: SUMMER 2004 NEWSLETTER DEAR READERS,