First a warning! This is some information that I have found useful but it is only my opinion, please check everything out for yourself . I do not pretend to be a medical expert in any way. I encourage you to do your own research so that you can have a more equal conversation with health professionals about your body and your treatment.
When I was first diagnosed in 2008 I really didn’t know where to go to get reliable information. The night before my reconstruction I was googling breast reconstruction and all I got was sites for breast enlargements. Not helpful! Since then I have gradually come across some useful sources of information and resources. So this is an attempt to provide a bit of a guide to what I have found useful. I have visited all these sites and found something useful in them all. The focus is on sites in Australia but there are also some excellent informative and supportive sites in other countries that are worth checking out. This is a work in progress that I will add to. Please contact me by email if you have other useful info that I could add.
Information & Support
BreaCan http://breacan.org.au Is a service of Women’s Health Victoria funded by Victorian Department of Health. It provides a range of free information sessions and activities for people affected by breast cancer or gynaecological cancer from its centre in Melbourne which is staffed by trained volunteers.
Breast Cancer Action Group www.bcag.org.au is a Victorian advocacy group to group to assist women to access information on treatment and research as well as providing a means of connecting with other women with breast cancer.
Breast Health www.breasthealth.com.au The National Breast and Ovarian Cancer Centre site provides information about breast cancer, symptoms, treatment options, complementary therapies and clinical trials.
National Breast and Ovarian Cancer Centre can also be accessed through www.nbocc.org.au
McGrath Foundation www.mcgrathfoundation.com.au Charity to raise money to provide breast care nurses throughout Australia. The site is mainly focussed on money raising although it does have profiles of breast care nurses who are available mainly in regional areas.
Information and on-line support
Breast Cancer Network Australia http://www.bcna.org.au/ Good place to find resources, information or get connected is They produce a regular newsletter that has interesting articles in it and are a good source for reliable information. This organisation is also influential in determining where/how research money is allocated. It represents people with breast cancer on a number of national and international bodies such as Cancer Australia.
Aussie Breast Cancer Forum http://www.bcaus.org.au/ is a user friendly on-line information and discussion forum for those wanting to discuss issues re breast cancer. They have a range of topics including general discussion, reconstruction and breast cancer stories. They also have a very good section on information and resources. Recommend checking this out.
NSW Cancer Council www.cancercouncil.com.au provides information and resources and an on-line support group.
www.breastcancer.org is a non profit US organisation dedicated to providing the most reliable, complete, and up to date information about breast cancer. It is a good source of reliable medical information. All medical information is reviewed by their Professional Advisory Board which includes over 60 practicing medical professionals from around the o=world who are leaders in their field. It also has a chat room and links to other women’s blogs.
www.cancerbuddiesnetwork.org is a UK based organisation which aims to provide an opportunity for anyone affected by cancer to connect with “a cancer buddy” someone who is in a similar position who can share their experience. This is not a specific breast cancer support. It didn’t really appeal to me so I didn’t join it but it may suit you.
Cancer backup (UK) www.cancerbackup.org.uk This is a consumer friendly site that provides extensive up to date information, practical advice and support.
National Cancer Institute (USA) www.cancer.gov This American site provides information about all types of cancer including breast cancer. I found it a little overwhelming to negotiate around but it does have lots of useful information on breast cancer diagnosis and treatment s well as trials. It also offers an on-line chat option. I haven’t tried this so cant comment but it looks quite medically oriented.
On-Line Clinical Support
Breast Cancer Click http://breastcancerclick.com.au/members/home This is a research project developed by Cancer Care of Western Australia (BCCWA) and Edith Cowan University (ECU) to build an online community via Internet technologies that will provide professional advice, information and support for people who have been diagnosed with breast cancer their families, and friends.
You can login to the secure, members only, website, where you can chat online, participate in discussion groups, host blog pages, and listen to podcasts, and post videos or photos. During the research project a health care professional will be introduced to provide advice, information and support for a period of 3-6 months, and links to relevant breast cancer information sites will be available.
Support for Young People
Now What http://www.nowwhat.org.au/ has been developed by CanTeen, the Australian Organisation for Young People Living with Cancer. This site was developed by staff and young people with cancer. It looks a great site that can really connect with young people. It’s stated vision is to enable young people to be actively involved and supported in their cancer experience. It aims to educate, connect, support and empower young people throughout their cancer experience.
Breast Cancer Blogs
http://accidentalamazon.com This is a site of an American photographer Kathi Kolb. Her blog is full of fantastic writing, images incisive comments and lots of useful information
http://paw-paw-salad.com This site provide a very extensive list of breast cancer blogs
www.thesilverpen.com is a blog by an American woman Holly Jacobs, a nurse and social worker. She writes humorously and authentically of her breast cancer journey. She has a list of useful books on her blog.