May 2007
The Young Ones
May 2007 Newsletter
In this month’s The Young Ones newsletter . . .
We hear from our long standing member, Kerri Guy talk honestly about what it means to be a BRAC1 carrier. Thank you to Cathy Altman for reviewing the DVD Young Women Talking, a free resource available to all young women through BreaCan. Also read about YABC’s latest venture: Up Close and Personal 2, a two day conference October 13th and 14th for young women affected by breast cancer. Make sure you add the dates to your diary.
May’s meeting started with a few hiccups and ended on a fabulous note. Rita Marigliani is currently travelling around Europe and she called in her friends from YABC to help run the show. I arrived extra early to set up and to meet and greet women as they arrived. However, for the first time in the history of meeting at Café Coco, we didn’t have a booking. Thankfully, the wonderful staff quickly set up the room out the back – nice and cosy, problem was we had a very large group of women attend and we were eventually ushered upstairs. There was lots of chatter, new friendships were formed and old friends reunited. It was a great night with many of the women vowing to come back next month (this time we are definitely booked in!). I’ll be keeping Rita’s chair warm again next month, so I hope to see you there in June…
Mary Macheras-Magias, The Young Ones Acting Coordinator
A strong family history – my story of genetic breast cancer
My story with breast cancer began when I was 11 years old and Mum was diagnosed with breast cancer in one of her breasts. She asked her surgeon at the time if it was hereditary as her mother, aunt and cousins had all had breast cancer. She was told at the time (it was the late ‘70’s) that it was extremely unlikely.
Ten years ago Mum saw an ad that was asking for Jewish women of Ashkenazy descent (Jewish people of European origin) with a strong family history of breast cancer to be involved in a research program that would culminate with genetic testing. Both Mum and I enrolled in this study and after completing lifestyle questionnaires and genetic counseling, had the blood test that would advise us if we carried either the BRCA1 or BRCA2 genetic mutation. I was aged 30 at the time. Our results came back positive to the BRCA1 genetic mutation. This was no shock to either of us due to our strong family history.
As a result of this, I was referred to a breast surgeon for follow up and discussion as to my options. Option 1 was a prophylactic bilateral mastectomy, and Option 2 was regular surveillance consisting of annual mammograms and six monthly check ups with my breast surgeon. I chose Option 2 as I was 30 years old, was married but had not had children, and figured that I would not get breast cancer until I was nearly 50 (Mum was 49). After around 2 years of seeing my breast surgeon every six months, I questioned why I needed to see her so regularly. Her reply was that if a cancer were found, it would only have been there for a maximum of 6 months, and therefore would be caught early. I came to appreciate that advice later in time.
And so I continued with my check ups and mammograms. Over the next few years I had my family – Nathan in September 1998, and Brendan in March 2001. My annual mammograms were delayed during the periods when I was pregnant and breast feeding. It was during the mammogram after Brendan was born that a lump was discovered in my right breast. I had thought that it was mastitis as I had only finished breast feeding a few months before. I was 35 years old, too young to have breast cancer! It turned out to be a 3.5cm tumour and quite aggressive. After intensive discussion with my breast surgeon, I made the decision to have a bilateral mastectomy with reconstruction (silicon gel implants). The surgery went well, my lymph nodes were clear and the tumour was HR negative. I also had my breasts lifted during reconstruction, so managed to get some nice perky breasts. Hey, I needed a positive out of this experience. I then had 4 treatments of “AC” chemotherapy. I figured that at my age I needed to do all that I could to try and make sure that the cancer did not come back.
After all of this, my ovaries started to come into question. BRCA1 also leads to increased risk in Ovarian Cancer, although there have been no cases of Ovarian Cancer in my family. My options this time were: Option 1 – oophorectomy (surgical removal of ovaries), or Option 2 – surveillance consisting of internal ultrasounds and CA125 blood marker tests every six months. This time the options were not so clear cut as Option 1 comes with the bonus of extreme early menopause (side effects and all), and the surveillance tests are not completely accurate with false positives being reported. After much counselling and discussion I have gone with surveillance for now (though this may change when I hit menopause).
I am so thankful that I was tested for the gene; my breast cancer was picked up early due to surveillance which otherwise would not have commenced until I was 40, by which time it would have been too late. And I do not regret my decision not to have a prophylactic mastectomy, I have managed to breast feed my beautiful children and enjoy my breasts for a bonus 5 years from diagnosis of the gene. I will also encourage my children to be tested when they are old enough (males have an increased risk of breast & prostrate cancer if they inherit the gene), as I am proof that knowledge can save your life!
Kerri Guy
A letter to BreaCan about Young Women Talking:
I’m just writing to thank you for the terrific DVD ‘Young Women Talking…about living with breast cancer’. It was really moving to hear other young women talk so honestly and compassionately with each other about their experience. I think the idea of having just women themselves talk about their experience (no other experts) was fantastic. I came away from it admiring the way the women involved had lived through breast cancer, and really grateful for their willingness to share their experience to help others.
I was diagnosed at age 38, with two young children, in 2005, so I related to much of what the women spoke about. I think young women with cancer can feel out of place (I was often the youngest by far in the chemo unit) so it was helpful to hear other young women talk, and feel almost as if I’d had coffee with them myself.
The model of a DVD which has the voices of women who’ve experienced cancer is fantastic – since the whole experience of being a patient can be one of being silenced and feeling powerless. I’ve recommended the DVD to my local MIA radiology clinic to help their staff understand the issues facing women with breast cancer and to help them see women with cancer less as patients and more as people.
Thanks too to the musicians (I’m a violinist so I know Edwina Kayser!) and the people who designed the video, who have made it really visually appealing. I think this will be a wonderful resource which will help so many women with breast cancer and their families. I’m also very grateful you’re providing it for free.
Cathy Altmann
YOUNG ACTION on BREAST CANCER
2 Day Weekend Conference October 2007 entitled: Up Close and Personal 2
There is a buzz around town: YABC is hosting a two day Conference for young women affected by breast cancer. Preparations have started and there is much excitement and support for this first ever National event specifically for young pre-menopausal women. The event will bring expert speakers from around Australia to present the latest high quality information on reproduction, menopause, relationships and sexual issues, and the related psychosocial issues. Young women will also share stories around these topics.
Some of the details that may be revealed thus far are: the Conference will held in Melbourne on October 13th -14th, 2007; Registration will be available online end of June; an Evening Celebration is planned for the Saturday night so that women may come together with fellow breast cancer survivors to enjoy a chat, a laugh and even a chance to get out on the dance floor; YABC Divas will be taking to the stage throughout the Conference showcasing their latest theatrical creations.
Melbourne will surely be the place to be that week as Amazon Heart also prepare to start their Australian ride a few days following the Conference
Further Information:
Registration Details Coming this June: www.yabc2007conference.org
Email YABC to join their Email List and receive regular Conference updates: ya-bc@hotmail.com
YABC also need help in preparation for the event
Do you have skills and talents that you would be willing to contribute to make the conference a success??
We need people with the following skills to assist with the organisation of the conference.
- PR skills- eg publicity, promotion, event management
- Administration skills- for mail outs, photocopying, registrations, compiling conference materials
- Graphic design skills- for posters, conference materials etc
- Photography skills
If you have any of the above skills/talents/interests please sing out loudly now!!
If you have any other talents or skills you would like to share please contact us
Contact Mary on: 0412 884 996 or email us on: ya-bc@hotmail.com
What’s Happening Next Month? (See The Young One website for updates)
BreaCan is free, confidential information, support and referral service for people with breast cancer, their families and friends. Open 10am-2pm Monday, Wednesday and Thursday.
BreaCan Resource Centre
Ground Floor
Queen Victoria Women’s Centre
210 Lonsdale St, Melbourne
POSTAL PO Box 1066, Melbourne Vic 3001
PHONE 1300 781 500 (cost of a local call for country callers)
FAX (03) 9921 0840
breacan@breacan.org.au
www.breacan.org.au
Thursday 7th June 12.00pm-1.30pm – Demystifying Chinese Medicine (All Welcome) Vlado Krstevski, is an experience Chinese medicine practitioner who specializes in working with people affected by cancer. He will explain the principles of Chinese medicine and talk about the complementary role that both acupuncture and Chinese herbs can play in managing the side effects of cancer treatments, as well as the ways to maintain your general well being.
Wednesday 13th June 12.00pm-1.30pm – Music For The Mind, Body & Soul (All Welcome) We all have a connection with music. Our tastes may be different, but still, music has a way of touching us all. Emma O’Brien, Senior Music Therapist, at The Royal Melbourne Hospital, will give an interactive session about the way music can be used to help attain and maintain health and well being in our lives. Singing optional, ears a must!
Wednesday 20th June 12.00pm-1.30pm – Helpful Hints For Coping With Stress & Anxiety (All Welcome) This session aims to support women to gain an understanding of how stress and anxiety can affect their energy flows and to provide an opportunity for them to share their experiences and discuss coping strategies. Liz Crocker is a Health Psychologist. She specialises in providing support for people dealing with cancer and assisting them to cope with their disease, its treatment and changes in their health.
Wednesday 4th July 12.00pm-1.30pm - Lymphoedema: What It Is, Treatment & What’s Available (Gynaecological Cancer Session) Judy Purbrick, Senior Physiotherapist at Mercy Hospital Lymphoedema Clinic, will be talking about lymphoedema and its association with gynaecological cancers. Women who believe they may be at risk of developing lymphoedema after gynaecological cancer surgery, or would just like to know more, are encouraged to come along with all their questions.
Thursday 12th July 12.00pm-1.30pm – Tai Chi: Talk, Demonstration & Participation Event (All Welcome) Konrad Dorn, Chief Instructor of The Art Of Harmony Tai Chi and Qigong Centre. Konrad will provide an opportunity to learn more about and experience the many health benefits of Tai Chi.
Wednesday 25th July 12.00pm-1.30pm – All About Osteoporosis (All Welcome) Libby Oldfield, Director of Fitwise Physiotherapy, will help us understand osteoporosis and it’s implications on bone density and strength. As we age, minimizing the impact of osteoporosis is vital in maintaining good posture, strong bones and preventing fractures. Libby will discuss how osteoporosis develops, symptoms, risk factors and the things we can incorporate in to our every day lives to help prevent it.
Newsletter Contributions
We welcome all contributions to and feedback on, the newsletter. If you’ve recently read a book, seen a website, lecture or production that you think other young women who have experienced breast cancer would be interested in, or would like to share your story, we’d love to hear from you. Send all your stories, reviews contributions and feedback to ritamarigliani@netspace.net.au
Our next meeting
Our next meeting will be on Thursday 28th June at 7pm Cafe Coco, 129 Smith St Collingwood.
Contact details Rita Marigliani
The Young Ones Coordinator:
041 123 5964
Email: ritamarigliani@netspace.net.au
Website: www.theyoungones.asn.au
