- From:The Courier-Mail
- August 10, 2013
PINK ribbons, pink merchandise and charity runs have turned the fight against breast cancer into one of the most recognisable “feel-good” causes in the world. Yet the distressing truth remains that one in eight Australian women will be diagnosed with breast cancer during her lifetime. Every day, 37 Australian women will deal with the anguish of a new diagnosis of breast cancer, the sort of news that no amount of “feel-good” therapy can fix.
Since the national breast cancer screening program now known as BreastScreen Australia was introduced in 1991, 56 per cent of eligible women, those aged 50 to 69, have taken up their invitation for a free mammogram. In June the federal government announced a $55 million boost to expand the free screening age to 74. Thousands more women pay for private clinic screening.
It is these women, in the age group most at risk, who are familiar with having their breasts squeezed between the cold plates of a mammogram machine so that the tissue might be X-rayed for abnormalities.
Early detection by mammogram screening has seen the number of new breast cancer cases in this country more than double between 1982 and 2008.
According to last year’s Breast Cancer in Australia: An Overview, a report released by the Australian Institute of Health and Welfare and Cancer Australia, breast cancer is now the second most common cause of cancer-related death (lung cancer is the first). Seven Australian women die every day from it.
For many healthy women, taking part in regular mammogram screening has become synonymous with taking active responsibility for their health, as if early detection has become fused with the idea of a cure. It’s as though all that pink “feel-good” awareness has turned having a mammogram into a trusted form of self-protection, a modern symbol of hope against cancer’s malignant stealth.
According to BreastScreen Australia, since Australia-wide mammogram screening was introduced 22 years ago by the federal government, breast cancer mortality rates have declined by 29 per cent. But there’s a growing number of clinicians, researchers and academics who argue that developments in cancer treatment over that same period are just as likely to be responsible for the drop in deaths as mammogram screening. Moreover, some suggest our obsession with tracking down early breast cancers means an otherwise indolent or slow-growing tumour that might cause a woman no harm in her lifetime will be unnecessarily treated.
“Over-diagnosis is a psychologically delicate issue,” says Professor Robin Bell, deputy director of the Women’s Health Program at Melbourne’s Monash University School of Public Health and Preventive Medicine. “To even contemplate that [treatment] may not be absolutely necessary is extremely upsetting.”
Bell is at pains, however, to distinguish between women at higher risk who should definitely consider treatment. “[Actor] Angelina Jolie, for example, knew she had a particular genetic trait and that put her at much higher lifetime risk. It’s important that people don’t think every woman is in the same boat … [but] a lot of women have assumed because they have the invitation to breast screen that it’s all benefit and no risk.
“We have an obligation to ensure they fully understand the issues that come with screening, such as false positives, and other issues that are more poorly understood, such as under-diagnosis and over-diagnosis. In the past, the messages [about the value of mammography screening] have been very strong and persuasive, but I think we need to balance that information so that women can weigh up the decision for themselves.”
Since 2003, the National Health and Medical Research Council has funded $148.3 million in research into breast cancer, including $20.5m last year alone.
But here’s the tricky part: for all the millions of dollars spent on research, doctors usually don’t know which early forms of breast cancer will go on to be invasive and potentially life-threatening, and which will not. So, if you are a woman who turns up for your two-yearly free mammogram screening to be told you have an early form of non-invasive breast cancer, what are you to do? What nerveless woman is going to adopt a wait-and-see approach?
Most women would be scared out of their wits and wish to immediately embark on a proactive course at the earliest opportunity, whether or not treatment turns out to be necessary. Here’s the rub: “We’re unable to tell which diseases might never have developed, and which will,” Bell says. “What we do know is that there will be women who are overdiagnosed … but we just don’t know which ones.”
Lisa Jansz, 47, of The Gap in Brisbane’s west, was diagnosed with an early form of breast cancer after a mammogram six years ago and doesn’t care about over-diagnosis. “I would have had chemo every single day of the week if I thought it was going to keep me alive,” Jansz says.
EARLY DETECTION OFFERS THE BEST HOPE OF CURING DISEASE, AND CERVICAL, prostate and breast cancer screening programs all actively go looking for cancer in outwardly healthy people with no visible symptoms. Before mammogram screening, breast cancers were usually discovered as lumps, by women or their partners or their doctors. Now mammograms can find cancer before it is technically invasive, while it is still in that abnormal state between a normal breast cell and a cancerous one.
Mammograms are considered to have achieved an effective outcome when they identify areas of abnormally high breast density that may be cancer, and which show up on X-rays as white matter. It’s considered not particularly useful for younger women to have mammograms as their breast tissue is denser, making X-rays harder to read.
Jansz was 41 when she asked her GP for a mammogram. In her job as a breast cancer theatre nurse at the Wesley Hospital in Brisbane’s inner west, she had a heightened awareness of the disease but also wanted a mammogram because it was just one of those things she wanted to check off her to-do list, much like an annual dental check-up and a regular pap smear.
“Some of my friends, the girls I hang out with socially, were a couple of years older than me and they’d all had them. I went to my GP for something else and I just happened to mention it: ‘Oh, can I have a mammogram? All my friends have had one!’ ” Jansz never expected anything but an all-clear.
She was on her way to a party at a friend’s house when she got a call from the doctor asking her to return. “I still didn’t think it was going to be anything, [as] it’s quite common [to be called back].” She knew she was younger than the usual age for a mammogram and therefore more likely to be among those 10 per cent of women recalled for further tests because of inconclusive results, only to be subsequently told that they do not have cancer. These fortunate outcomes – following much anxious waiting – are known as “false positives”.
But Jansz was not so lucky. After a biopsy she was found to have ductal carcinoma in situ (DCIS), abnormal cells in one or more of the milk ducts that have not yet invaded other parts of the breast. Sometimes DCIS is classified as “pre- cancerous”, or – in the United States – “stage zero” breast cancer, but all Jansz knew was that she was suddenly frightened.
“I was devastated, I just couldn’t believe it,” she says. “They said it was pre-cancerous but as far as I’m concerned it’s still breast cancer. It was treated with a lumpectomy and radiotherapy but by then I was obsessed, totally obsessed. When I was first diagnosed I thought I was going to be dead in two years, I was a bit of a basket case for a little while. I’d be awake all night, feeling, prodding, poking, and that’s how I found the next one myself [in the other breast] by sheer feeling, prodding and poking. That one was a more aggressive tumour, malignant.”
Jansz says her marriage broke up under the pressure. She and her former husband had immigrated to Australia from Britain in the early ’90s with their two pre-school-age daughters, Maddie (now 21) and Francesca (now 19).
One shining moment for Jansz amid the trauma of fronting up for surgery to remove the tumour in the other breast and to check that no lymph nodes were affected (they weren’t) was that she was surrounded by the familiar surgeons and nurses she had worked with for years.
Jansz did not require a mastectomy. She’s now back working again, in a new relationship and is happy. If the experience hasn’t made her a better breast cancer theatre nurse, it’s possibly made her a more empathetic one. “When patients come in and they’re crying on the table because of what’s ahead of them, I totally understand where they’re coming from,” she says. “I don’t say, ‘Look, I’ve been there and I’m still here’, because it’s not the sort of place to say that. I just hold their hand and wait till they’re asleep. I just know what they’re thinking. It’s very scary, it’s horrible.”
Jansz says a mammogram saved her life. “If I hadn’t asked my GP for one, who knows what would have happened? This stuff was going on inside me and I had no idea. It could have been a completely different story if I hadn’t had one.”
ACCORDING TO THE MOST RECENT FIGURES FROM THE AUSTRALIAN INSTITUE of Health and Welfare, Lisa Jansz represents one of approximately 1600 Australian women diagnosed annually with DCIS. It is these women in particular, with low-grade or abnormal cells, whose disease is picked up early through mammogram screening, who are most likely to face possible over-diagnosis (or over-treatment).
Usually surgeons do not know the extent or grade (high or low) of DCIS disease, or whether it is contained or has spread beyond the margins of the site, until after a woman has gone through the trauma of surgery. And Dr Helen Zorbas, CEO of Cancer Australia, admits that “determining exactly which types of DCIS are linked to increased risk of developing subsequent invasive breast cancer remains a key question for future research”.
Professor Alexandra Barratt of the School of Public Health at the University of Sydney’s Medical School is one of the authors of a study on over-diagnosis in breast cancer screening published earlier this year in The British Medical Journal. In an interview with Qweekend, Barratt quoted a 2012 US study of data over 30 years, published in The New England Journal of Medicine, which estimated as many as 1.3 million women were over-diagnosed and received cancer therapy they didn’t need.
In her own study of Sydney women, Barratt and her colleagues found that the general public – and in particular women undergoing mammograms – were largely unaware of the concept of over-diagnosis.
“The over-diagnosis issue is an extraordinarily complex one,” Barratt says, adding that she and her colleagues are sensitive to the possibility that debate about the downsides of mammography screening may cause women to regard them outright as unnecessary. “It’s a really difficult, complex topic that puts women, doctors and policy-makers on the horns of a dilemma.” She says while they know there is overdiagnosis across the population “we can’t pinpoint which women are over-diagnosed”.
Barratt says when mammography screening was introduced, there was evidence only of its benefits. “It’s only in the past 20 years that the evidence has accumulated and now over-diagnosis is the main harm. Problems arise if a cancer is slow-growing, or even harmless, and it’s found by screening, because we can’t tell which cancer is indolent and which is fast-growing. As a result, everyone is treated, and this leads to over-treatment.”
Barratt says the questions that need to be asked are whether over-diagnosis is a reasonable price to pay given the undeniable benefits of mammography, and how those benefits are balanced against the harms.
“I think the evidence is that the benefits are not as big as we first thought, and in fact the harms are more substantial and more frequent than we thought. The Cochrane review found that screening increases the number of mastectomies and number of women needing radiotherapy.”
The Cochrane Collaboration, an international NGO and World Health Organisation assembly member specialising in medical research and data, this year published an extensive review of trials of mammogram screening, compared with no screening, of more than 600,000 women in dozens of countries, including Australia.
It found that over-diagnosis and over-treatment were at 30 per cent, meaning that for every 2000 women invited for screening over 10 years, one would avoid dying of breast cancer and 10 healthy women, who would not have been diagnosed in the absence of screening, would be treated unnecessarily. Additionally, more than 200 women would experience “important psychological distress, including anxiety and uncertainty, for years because of false positive findings”.
Barratt has no desire to scare women into not having mammograms. “From the evidence I think it’s reasonable for women to decide, ‘Yes, I want to do this, to reduce my risk of dying from breast cancer’, but it’s also reasonable for women to look at the evidence and decide, ‘No, I don’t want to do this’. But for that to happen, we need to have good-quality information available to women.”
Dr Helen Zorbas says Cancer Australia aims to support effective messaging around issues of public health. “In that regard we’re working with the federal government and with the BreastScreen Australia program to develop information to assist women in deciding whether or not to participate in screening.” She says a resource is currently in its final stages of development, one that aims “to support women’s decision-making around participating in screening [and to] provide as much information as possible around the potential benefits, as well as the potential downsides, of screenings”.
One of the major downsides of screening, identified by the Cochrane Collaboration review, was that the increased use of radiotherapy may increase mortality in women considered to be low-risk. This is because of latent damage to the coronary arteries and possible heart damage resulting from some types of radiotherapy. “This heightened mortality becomes important when many healthy women are over-diagnosed,” the report said.
Professor David Roder, of the University of South Australia and a senior adviser in population health at Cancer Australia, argues that in medicine, as in other areas of society, doctors can only do the best with what they know at the time.
“Over-diagnosis will happen,” he says, “so the issue really is, how can we minimise it? It requires a research effort in order to say, ‘Well, here’s a cancer that we can safely leave’. One wouldn’t be inclined to do that without good evidence, to leave something that otherwise looks malignant inside a person, so we need good evidence. I agree it’s a research priority, but it’s an international one that’s being pursued all over the place to try to better define those cancers.”
For now, Roder believes the positive result of mammography on mortality is “pretty much without question in Australia”. “We’re lucky to have a continuum of studies that show quite a profound impact in reducing deaths,” he says. “What breast screening achieves is dependent on the quality of the program that’s delivering the screening, so I think it’s really important when you make judgements about the benefits of screening in Australia that we look at our own results and not at results from other places where they have different protocols, different quality controls, different training.”
Zorbas says Australia enjoys some of the best, if not the best, survival rates for women diagnosed with breast cancer anywhere in the world. “There is a clear relationship between stage of diagnosis and survival, so the earlier the cancer is detected and treated, the better the survival outcome. We have seen significant improvements in the five-year survival rates for women with breast cancer in Australia. Just 25 years ago, 72 per cent of women were alive five years after diagnosis; we now have 89 out of every 100 women alive five years after diagnosis, and that’s across all stages of the disease.”
In the future, mammogram screening may come to be seen as a crude instrument in diagnosing cancers. The National Breast Cancer Foundation, for example, is funding a study to investigate blood testing as an early cancer detector. Monash University’s Professor Robin Bell is convinced that in years to come, “blanket screening of all women over the 20 years of mid-life will appear a very crude way of identifying breast cancer”. But for now, it’s all we have.
“IF IT’S NOT CANCER, THEN WHY AM I SO WORRIED?” ASKED HERVEY BAY primary school teacher Rachel Aspinall, 47, on a breast cancer blog two-and-a-half years ago following her own diagnosis with DCIS.
The mother of four children (Jenny, 19, Mark, 18, Katie, 17, and Gary, 11) had never heard of DCIS, so she set about Googling everything she could find. But the more she found out, the more confused she became.
“It puts you in a bit of a dilemma when you start to read about it online,” she says. “Some sites say that it’s not even cancer, but pre-cancer. I was so confused.”
Aspinall had been having mammograms since she turned 40, because an elder sister, Miriam, had been diagnosed with breast cancer. Throughout, she had the support of her husband, Philip, a project manager, and together they decided to opt for treatment (her DCIS subsequently proved to be high-grade).
“I’d rather take the chance and have treatment than wait 12 months and find out that it’s an aggressive cancer that has spread,” Aspinall says. “I tried to make an informed decision, asking my surgeon, and also talking to a plastic surgeon [about a possible mastectomy]. I talked to him, and to a radiation oncologist, prior to making a decision. In the end I had enough confidence in my surgeon, and in between talking to her and reading as much information as I could, I made the decision to go down the lumpectomy and radiation route.”
Aspinall believes in the value of independent research. Her advice for other women? “Don’t be bullied into jumping into anything. Speak to doctors, more than one if necessary. Screening is important; just don’t rely on it 100 per cent.