Networking, advocating and support for young adults with cancer in Australia

Information about available support and assistance at all stages.
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Doxiamonev
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Postby Doxiamonev » Sun Mar 16, 2008 2:10 pm

Hugs

Doxia
Some people are always grumbling because roses have thorns; I am thankful that thorns have roses." Alphonse Karr

Dx 27.12.07,Gr 3, IDC Lt breast 1cm (Prim Ca) & 2.5cm (L/Node)
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Lark
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Postby Lark » Sun Mar 16, 2008 5:05 am

Thanks Jay66, Shell225, Cas145, Cyndie and Warpgirl :)
As an interesting aside, entering YA + "young adults with cancer" into the Google search window gets about 2500 returns, YAC + "young adults with cancer" gets about 30 returns, and YAWC + "young adults with cancer" gets about 17 returns. Most young adult cancer websites I visited use YA as an abbreviation for young adults but don't go any further, but two use YAC or YACS eg www.yacsdc.org call their website YACS-DC. They say "YACS-DC enables young adult cancer survivors (20s and 30s) living in the DC metro area to connect, share experiences, and exchange resources."
YAC(S) sounds catchy and I think it might take among many who like to use such abbreviations.

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Postby warpgirl » Sat Mar 15, 2008 12:03 pm

Lark,

many thanks for all your work in researching and putting that guide together for us.

Regards
Helen

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Cyndie
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Postby Cyndie » Sat Mar 15, 2008 7:16 am

Thanks Lark - awesome job!!!
Cyndie
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Postby cas145 » Fri Mar 14, 2008 9:57 pm

Thanks Lark :hugs: Cas

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Postby Shell225 » Fri Mar 14, 2008 12:09 pm

Thank you for all your time and energy Lark.

:hugs: Michelle
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Postby jay66 » Fri Mar 14, 2008 9:45 am

Image
Thank you Lark once again you have done incredible research for us. Thankyou.
Life, Live it.

Dx 7/07 DCIS 2cm, IDC 1.8cm, multifocal. Grade 2/3. 0/7 Nodes. Vascular Lymph Invasion. ER/PR- Her2 +++ under reconstrution lat flap, expanders. C cup

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Networking, advocating and support for young adults with cancer in Australia

Postby Lark » Fri Mar 14, 2008 6:46 am

Many of you will be familiar with two or three of the groups mentioned below but there are new ones just emerging you may not have encountered yet.

There is a concerted effort under way both world-wide and in Australia by some very motivated and energetic young people to advocate on behalf of young adults (18 to about 40 years old) with cancer and their supporters and care providers, and to provide social networking and information. And to gain a wider recognition among the medical profession and the health services of the unique needs and requirements of young adults with cancer. They are utilising the networking facilities including forums available on various popular social interaction websites including Facebook and MySpace.

Shari Falls has created a group on Facebook called i[2]y Down Under for young adults age 18 to 40. It's the Australian group of the I'm Too Young For This! Cancer Foundation based in the USA and founded by concert pianist and composer Matthew Zachary who at the age of 21 was diagnosed with brain cancer. The address is http://www.facebook.com/group.php?gid=8492024091
The group's introduction says in part "Sign up if you'd like to socially network with other young adults via hip, non-clinical and non-threatening events like a bbq and beer, happy hours, cocktail parties and road trips. Stupid Cancer!" and "The focus of i[2]y Down Under is to promote the awareness of young adults, and to advocate on behalf of thier struggles, challenges, needs, desires and goals."

Shari's also started a i[2]y Down Under group on MySpace at http://groups.myspace.com/i2yDownUnder

'In My Shoes' - The Warwick Foundation - is a new non profit charitable organization in Australia focusing on supporting young adults (18-40) years on their cancer journey. It was founded by Samantha Lehmann who lost her 35 year old brother Warwick to cancer in 2005. "In memory of my Brother who loved music, his friends, his family and his life, I have set up The Warwick foundation, I believe together we can fight and make a difference for young adults on their cancer journey". She says "The reality is Young Adults (aged 18-40+/-) are the fastest growing demographic among the over 10 million new cancer Diagnoses each year world wide. ... And while there are hundreds of cancer related organizations in existance today, there is almost none that are strictly focused on meeting the unique needs and issues faced by Young Adults on their cancer journey."

The Foundation's website address is http://www.thewarwickfoundation.org.au
and the Foundation also has a presence on MySpace at www.myspace.com/thewarwickfoundation
and Facebook at www.facebook.com/group.php?gid=2765515350
Among other activities, the Foundation is advocating for a new model of care for adolescents and young adults with cancer, conducting fund-raising events, and connecting young adults on the cancer journey through their 'Find a mate in your shoes' program.

Nikki has started an Australian networking group on the Planet Cancer website called "Australian Network for Young Adults with cancer". It's address is http://myplanet.planetcancer.org/group/ ... iannetwork
She says "Lets band together and push for better cancer support services in Australia for YOUNG ADULTS up to 40+ years!". She's particularly keen to hear from any young adults in Australia (and their supporters) who've been diagnosed with cancer, about their good and bad experiences of cancer treatment and support services, and their opinions as to how services for young adults can be improved. There's a forum on the group's webpages where you can post your experiences and opinions.

CanTeen is a national support organisation for young people aged 12-24 living with cancer. Here's a couple of quotes from their website:
"CanTeen has nine offices throughout the country, supporting thousands of young people living with cancer. Each Division has an office, dedicated (and very cool) staff, and a hugely important committee driven by CanTeen Members. They each run their own programs and camps, sometimes coming together to run joint activities and providing the opportunity for Members to broaden their peer networks."
"Ranging from week-long summer camps in picturesque locations around Australia for up to 100 CanTeen Members, to locally-based programs focused on the specific needs of different groups of young people living with cancer, CanTeen offers its Members a comprehensive range of support options. Nothing reduces isolation like spending positive time with someone else living in a similar situation."

You can find further details of their programs and other services they offer at www.canteen.org.au

Within their website they have established The Adolescent and Young Adult Cancer Group. They say "Adolescents and Young Adults (AYA) with cancer are the lost generation ... when it comes to research, treatment and support - not only in the Australia/New Zealand region but internationally. However, there is now growing momentum for change in the way we treat and support AYA with cancer. The AYACG is an informal interest group for people interested in receiving information and news relating to improving care for adolescents and young adults with cancer. Our primary focus is the Australia and New Zealand region, but all are welcome to join."
For more info or to join the group, look for a link to "AYACG site" on Canteen's home page.

The Peter MacCallum Cancer Centre in Victoria has a program for adolescents and young adults with cancer, called onTrac@PeterMac. Their website address is www.petermac.org/ontrac/
"Any young person undergoing cancer care in Victoria is eligible to access the services of the onTrac@PeterMac program". The age range of those eligible is currently 15 to 25 years.
They say: "In recognition of the unmet needs of adolescents and young adults (AYA) with cancer, and as part of its commitment to advancing oncology services, the Peter MacCallum Cancer Centre has pioneered an Australian-first cancer service for AYA called onTrac@PeterMac. It aims to provide optimal treatment, care and support for AYA with cancer and ultimately improve survival rates."

There's further information about OnTrac@PeterMac in an i[2]y Down Under Facebook group discussion board thread here www.facebook.com/topic.php?uid=8492024091&topic=3873

The Young Ones is a social support group for Victorian women under 45 who have experienced breast cancer. They meet for dinner and a chat once a month and the group now has more than two hundred members. There are details of their monthly meetings and other activities, and how to join, on their website at www.theyoungones.asn.au
The "Articles of Interest" page including a section called "Resources for young women - collated by BreaCan" is well worth browsing for items that may be relevant to your situation. You can read experiences of several members on the Shared Stories & Ideas page. And if you're into leather, polished chrome and the roar of the big bikes, check out the photo of Christine with a Young Ones bear mascot on the Pink Ribbon Ride 2006 here www.theyoungones.asn.au/photo_gallery?w ... ion&sid=33

If you know of any other groups supporting and advocating specifically for young adults with cancer in Australia maybe you'd like to post the info here. It can be surprisingly difficult to find even very active support groups and websites on the internet. And if you'd like to contribute to the development of treatment and support services, information and advocacy for young adults with cancer in Australia, just go to the abovementioned websites and you'll find invitations to contribute on most of them.

And I need scarcely state that people of any age who've been diagnosed with cancer will be welcome and find support and info on and in many other cancer websites and support organisations, such as the Aussie Breast Cancer Forum :) .


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