When Kirsty Smith was first diagnosed with breast cancer four years ago at the age of 28, she never felt she was alone. She was invited to join support groups for young women with breast cancer and built up a network of fellow patients while undergoing treatment.
The Mount Colah teacher had been in remission for three years and was planning on starting a family when she underwent a scan before trying to conceive. It showed that she had secondary breast cancer in the bone.
While the diagnosis came as a blow, Mrs Smith was also frustrated to discover the same level of support she had enjoyed earlier just did not exist for women with secondary breast cancer.
Breast cancer overall has a high survival rate - about 88 per cent of people beat the disease.
''When you have early breast cancer there are support groups, there is lots of information and you have a goal to annihilate this thing,'' she said. ''With secondary breast cancer, it's quite different.''
She has been unable to find a support group for young women with secondary breast cancer in Sydney and groups for women with early stage breast cancer are not suited to her needs.
''I know I'm not the only young woman going through this,'' she said. ''I know there are others out there. The lack of support can make you feel very isolated.''
About 8000 Australian women are living with secondary breast cancer, according to figures from Breast Cancer Network Australia. Those women have vastly different needs to patients diagnosed with early breast cancer.
''When I was first diagnosed my goal was to hit remission,'' Mrs Smith said.
''Now my goal is to live as well as I can for as long as my body will let me.''
Tomorrow, Breast Cancer Network Australia will launch a reworked resource for women with secondary breast cancer. The information pack, called Hopes & Hurdles, aims to help women to come to terms with the illness and learn what to expect at their own pace.
The chief executive of Breast Cancer Network Australia, Maxine Morand, said women with secondary breast cancer required a different level of support than those with early breast cancer.
''With an initial diagnosis of breast cancer you're looking for a cure and a long, healthy life after that,'' she said.
''For the vast majority of women, that's exactly what happens. But secondary breast cancer is a much more challenging diagnosis. When you move from early breast cancer to being told it has spread somewhere else in the body, it becomes an incurable disease.''
Associate Professor of medical oncology at the University of Sydney, Frances Boyle, said while there are no accurate statistics on how long women can live with secondary breast cancer, she is aware of patients who have survived up to a decade after diagnosis.
''We know on average they survive for years rather than months and we know from our clinical experience that they are living with the illness for longer and often living quite well,'' she said.