WHEN Sally Crossing was diagnosed with breast cancer in 1995 she didn't know where to turn. There was no instant internet sites from reputable sources, no help finding the right doctors, advice on the best prosthetics after mastectomies or the best wigs after chemotherapy-induced hair loss, little counselling and post-surgery support.
"It was a real mess," Crossing says. "Women were getting around with bags of bird seed in their bras and all sorts of things, switching prosthetics with each other, it was pretty grim."
The experience led Crossing to start the Breast Cancer Action Group, and play her part in what has become an incredible story of activism: fighting what now seems a winning battle against a disease many thought invincible.
Breast cancer is coming of age. In a publication to be released on Saturday, 18 Years of Difference: how research has transformed a woman's experience of breast cancer, the National Breast Cancer Foundation describes the massive shifts in treatment, research and advocacy.
Foundation chief executive Carole Renouf says there is no doubt that the breast cancer movement grew out of the women's rights movement.
"It has strong feminist roots," she says.
"In that sense I think the almost instinctive sense of solidarity women tend to exhibit has really fuelled activism for breast cancer."
The success of the movement is unprecedented. Pink pervades our water bottles, newspapers, clothing lines and cricket grounds.
A 2005 report by Cancer Australia found funding for breast cancer research far outstrips that for other cancers.
Its share was double that of bowel cancer, which affects and kills more people, and 10 times that of lung cancer, which is less common but deadlier.
But this focus - driven by hundreds of thousands of women and their families - has produced amazing results.
The death rate has fallen 30 per cent since 1994, the year the breast cancer foundation was formed.
Its goal is that by 2030 no Australians will die of breast cancer. "I think now is a time to look forward with great optimism," Renouf says.
She is aware of the criticism that breast cancer promotion has taken from more neglected cancers, or those sick of the pink brand.
"There are upsides and downsides and the upside is really the potential for breast cancer to open the door for other cancers to follow," she says.
This applies not just to models of activism, but also to research and law. Soon a judgment is expected in the Australian court case that will determine whether the patents can legitimately be granted on the so-called "breast cancer genes", BRCA1 and BRCA2. The decision could have wide-ranging effects on cancer research and treatment.
But the foundation's head researcher Dr Alison Butt says breast cancer research is having an impact on other cancers because defining cancer solely by its original site is no longer supported by emerging research.
"It might mean that a prostate cancer at a molecular level is much more similar to a breast cancer than another prostate cancer," she says.
At the Victorian Breast Cancer Research Consortium Laboratory, scientists are examining breast cancer tumours at their most basic level. Professor Geoff Lindeman, who runs the lab with his "partner in crime" and wife, Professor Jane Visvader, is discovering how stem cells, and their daughter, or progenitor cells, are involved in the development of some of the most aggressive breast cancers.
Lindeman and Visvader published a paper outlining just how hormones could lead to the development of these "triple-negative" cancers, so-called because they do not contain three common receptors that our best breast cancer drugs target.
This key culprit molecule they identified, EZH2, is also a marker of poor outcomes in cancers such as prostate cancer.
"What is beginning to happen at an experimental level is people are increasingly able to sequence all 30,000 genes in a cell and so we are getting a bit of a landscape view of every gene in a tumour," he says.
"And the costs of that are becoming a lot lower. It's becoming technically easier in a research setting to sequence more tumours more cheaply."
This week, London's Daily Telegraph boldly announced that within five years every patient would be given a full genetic test of their tumours, making cancer a manageable, rather than deadly disease.
Lindeman says this is "a bit optimistic, in terms of getting a definite catalogue of a tumour". But he points out that we are already seeing the adoption of new gene-based tests, and he believes within five years that a number of these will be in common use.
John Hopper, the director of research for the Centre for Molecular, Environmental, Genetic and Analytic Epidemiology at the University of Melbourne, believes we are about "half way there" when it comes to fully understanding the genetic basis of breast cancers.
He says this new information will also help us use screening technologies more cleverly.
Late last year an expert panel in Britain said that for every life saved by its breast-screening program, another three women would be over-diagnosed and treated unnecessarily for cancer that would never have caused them harm.
Hopper, who pioneered the study of the link between mammographic density and breast cancer risk, says there is enormous potential for emerging research to help identify which women would most benefit from screening.
Already a picture is emerging of hundreds or thousands of genes being linked to mammogram density.
"The ultimate aim is to be able to say to a woman when she comes in for her first mammogram . . . you should come back for the next mammogram in one year, two years or five years time," he says. "At the moment everyone is treated the same, but there is enormous variation between women."
For Sally Crossing, every new piece of research is important, every dollar raised makes a big difference. "It's wonderful, breast cancer has led the way - everybody else is following it, whether they will admit to it or not," she says.
This week she got her six-monthly all-clear after a metastatic cancer diagnosis in 2005. "So perhaps [the breast cancer foundation] will reach their goal by 2030?" she says. "And I hope I do, too."
Reasons to cheer pink activism
WHEN Sally Crossing was diagnosed with breast cancer in 1995 she didn't know where to turn.
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