October 2005
The Young Ones October Newsletter.
News from our last meeting.
We had 3 new members at our last meeting and Rita filled every one in on the many events happening during October (breast cancer awareness month) The next Young Action on Breast cancer meeting has been changed to Thursday November 10th at 7pm Grace Darling Hotel, Smith St. Collingwood. The Young Working Women’s Party is currently preparing a list of the top 10 key issues that young women with breast cancer would like their General Practioners to be aware of. If you would like more info on either of these groups contact Rita on the Young Ones phone.
You can check out where the Mini Fields of Women will be held this year in Victoria on the Breast Cancer Network Australia’s website which is linked to our website (address under contact details) The major Field of Women was held earlier this year at the MCG with live women instead of silhouettes.
I am sending out a questionnaire with this newsletter that I would appreciate you filling in and returning to me as soon as possible so that I can finally finish setting up our new data base. The data will be very helpful to the group when making future decisions on what direction the group should take and what our member’s needs and concerns are. As mentioned in the questionnaire we will not pass on the information you give us to any other group, research or member without consulting you and gaining your permission.
Make sure you check out the website regularly as I will be listing some new website links, photos and events in the next couple of weeks.
A few of us attended the Glitter Ball on October 1st due to the generosity of Mr Ron Dewhurst a board member of the Breast Cancer Network Australia. Also sitting on our table was Melissa Hale, who was just 21 when she was diagnosed with breast cancer. Her story features in the current Beacon. Melissa, her family and friends held a cocktail party that attracted over 500 people and raised $28,000 which she donated to the BCNA. We had a wonderful night at the ball with lots of laughter, champagne and dancing and would like to thank Ron for making the night possible for us.
A group of us are also off to the Otis Ball this weekend because of the generosity of The Otis foundation that have subsidised our tickets. I’ll be posting photos on the website, if I can remember to take them before I drink too much champagne.
I’d like to say “Break a leg” to Kerri and Mary, two of our members who have written a play about young women with breast cancer. The pair also direct and act in the play which premiers on Friday 28th October. (see details in What’s On) Good luck, girls I’m sure it will be a wonderful success.
Thanks to those members who have contacted us to offer to sell Pink Lady badges for Breast Cancer Awareness month. The Pink lady is the emblem of Breast Cancer Network Australia and badges sell for $5 each, of which $2.50 goes to the Network and $2.50 we keep. If any body else would like some badges to sell at work or to friends then please contact me and I’ll post you some out. (minium of 10) Once you’ve sold them you can deposit the money into The Young Ones bank account.
I will be uncontactable between October 27th - November 7th as I’m off to Queensland for a holiday without the kids and hubby. (jealous?) Mind you I will miss my husband. I will definitely let you know about the great time I had in the next newsletter. Rita will be able to help you with any queries while I’m away. Contact her on the Young Ones phone number.
Our Xmas Party will be held on Friday December 9th at a venue to be decided. Please put this date in your diaries and send me some ideas on where you want to go so as I can book in and put the details in the next newsletter.
Our next meeting. Our next meeting will be on Thursday October 27th at 7pm Cafe Coco, 129 Smith St Collingwood.
Kconfab Conference Report.
In my role as a consumer representative for Breast Cancer Network Australia (BCNA) I attended the kConFab (previously Kathleen Cunningham Foundation) Familial Cancer Research & Practice conference from the 1st September to 3rd September. It was held at Couran Cove Island Resort, South Stradbroke Island, Queensland. The conference was a combined meeting of kConFab, Australian Ovarian Cancer Study, the Family Cancer Clinics of Australia and New Zealand, and the Australasian Colorectal Cancer Family Study. Being of a non-medical background, I must admit that I experienced some trepidation at attending a predominately medical conference, and also with the knowledge that there would be only 1 person attending that I knew – Gerda Evans, the Victorian state representative for BCNA. My fears were laid to rest quite quickly as the conference attendees were all very friendly, and they were very interested to speak with someone for whom the research that they are conducting is relevant. In regards to my lack of high-level medical knowledge, some attendees reassured me that I was not alone, and a good tip was not to attend those sessions where the session title was incomprehensible! This tip did however come after a morning of sitting through presentations where high-level medical information was presented that went completely over my head.
I would like to touch on some of the research that is currently being conducted, some of which I gave a quiet cheer that at last our concerns are being heard and addressed.
Research has been conducted on cancer screening and risk reducing surgery in carriers of BRCA1 or BRCA2 mutations. A questionnaire was sent to women who were recruited through kConFab. The results were that the majority of mutation carriers who had not experienced breast cancer or ovarian cancer were using screening methods rather than risk reducing surgery. Of those who undertook screening, most had not had ovarian screening in the 3 years after entering kConFab, and despite the limited sensitivity of mammography in mutation carriers, most are undergoing annual mammograms but having fewer than 2 clinical breast examinations per year. Bilateral oophorectomy (removal of ovaries) is more common than bilateral mastectomy in terms of risk reducing surgery. Kelly-Anne Phillips from Peter MacCallum Cancer Centre presented this information and posed the question that she did not understand why women would not take the risk reducing surgery. I did speak with her afterwards to explain that as a young woman, lifestyle factors have a huge impact and it is not as cut and dried, as it seems.
Another presentation that I found of particular interest was on the adjustment of partners of women at high risk of developing breast/ovarian cancer. It was identified that whilst extensive research and counseling has been available for the women, their partners seem to have been ignored. The aim of the research was to investigate the impact of the women’s high-risk cancer on their partners. About 10-20% of partners were found to have high levels of distress warranting clinical interventions. The research findings were that the importance of considering partners as well as at risk women in terms of service provision were highlighted. The findings also stress the need for partners to obtain information and support specifically tailored for their unique needs.
I came away from the conference with the knowledge that a lot of research is being conducted on HER2 tumors, in particular looking for ways to “switch off” hormonal receptors. There is also a lot of research being done to look for BRCA-X, this is a belief that there must be another genetic mutation as there are many families with a lot of breast cancer, but they all test negative for BRCA1 & 2 gene mutations. Overall I found the conference to be of great interest and could fill many more pages with research information.
And yes, I did manage to squeeze in some fabulous walks each day, together with lazing by the pool before the last afternoon session!
If you are after more information on the conference or any research on familial cancer, please visit the kConFab website at: http://www.kconfab.org/
Kerri Guy
What’s happening?
Thursday 13th October, 6.00-7.30pmFertility and Breast Cancer - What Does it All Mean? BreaCan, Drop in centre, level 1, 123 Lonsdale St. Melbourne. A woman's fertility can be greatly affected by the treatment choices she faces after a breast cancer diagnosis. Negotiating this complicated area can be both daunting and confusing. Dr Kate Stern, Fertility Specialist and Gynaecologist will speak on a number of fertility related issues including the effects of oestrogen and early menopause. Cost; Free. For more info phone 9664 9333.
Macedon support group, 21st October 8am will celebrate their 10th anniversary with a breakfast for Australian BreastCancer Day. They will have and a guest speaker and will need you to RSVP for catering purposes. Cost; Free. To book and for more info contact Helen Hill on 97449564.
October 24th, Australia's Breast Cancer Day.
Tuesday 25th October, 6-8pm, the Cochrane Breast Cancer Group and Breast Cancer Action Group, Breast CancerForum, Melbourne Convention Centre. Topics will include Hormone replacement therapy, Aromatase Inhibitors, Sentinal node versus Auxillary staging, Lymphoedema, Prophylactic Mastectomy and Patient preference treatments. Cost; Free. To register by 7th October on line http://www.colloquium.info/or call 02 95625 015.
Thursday 27th October, 12.00-1.15pmBreast Surgery - Making Decisions, BreaCan.Jane O'Brien is an experienced breast surgeon who will talk about what a breast cancer diagnosis means, the steps involved in surgery, and how she works with women in making decisions about their treatment and care. As part of the session Jane will also discuss the common issues and difficulties that are faced by women at this early stage of treatment. Cost; Free.
CHANGES IN THE MAKING, Young Women's Journeys through Breast Cancer, written by Kerri Guy & Mary Macheras-Magias, both affected by breast cancer in their early 30s. The play touches on the dating scene, coping with families, career, recurrence, cultural taboos, body image and sexuality. Performance dates: Friday28 Oct, Saturday 29 Oct matinee and evening performance. Venue: Grant Street Theatre, Southgate. For info call Mary Macheras-Magias on 9807 3964 or 0412 884 99
Thursday 10th November, 12-1pm, BreaCan, Demystifying Chinese Medicine. Vlado Krstevski who is an experienced Chinese medical practioner who specialises in working with people with cancer will explain the principles of Chinese medicines and the role it can play in managing the side effects of cancer treatments.
Cost; Free. For info call 9664 9333
Saturday 12th November, 1-3.10pm, Live Telecast across Australia on SKY Channel. Topics covered will be Hormone Treatments, Menopause, Cancer Trials and Support Groups. To register or for more info call
02 9265 0700 Cost; Free.
Wednesday 23rd November, 12-1pm, BreaCan, Lymphoedema: What it is, Treatment and What’s Available. Judy Purbrick, Senior Physiotherapist at Mercy hospital Lymphoedema Clinic will talk about lymphoedema and its association with breast cancer. Cost; Free. For info 9664 9333
Saturday Arvo Group.
Just a reminder that the next Saturday Arvo lunch get together is on 15th October at 12.30pm, Café CoCo, 129 Smith St Collingwood. This will be the last one for the year and it would be great to see as many of you as possible there. Please RSVP to me if you’re coming for booking purposes.
Contact details. Tanya Wilson or Rita Marigliani: 041 123 5964 Postal Address: 9 Dunrossil Drive Sunbury 3429 E mail: tanya_wilson@optusnet.com.au Website: www.theyoungones.asn.au
