There's no Aboriginal word for cancer

A cancer diagnosis is more likely to kill an Aboriginal than a non-Aboriginal Australian. Our Researchers are asking ‘why?’

Dianne McCarthy is 54 and has stage-four lung cancer. From her bed in a Northern Territory Palliative Care Unit, she explains that the diagnosis came as a shock. “I was in hospital for something else and they found it my lungs. That was just a few weeks ago.

“I’ve lived with Rheumatoid Arthritis since I was 25, so I am used to being sick. But God must be saying my time is up. I’m trying to face it with a peaceful heart. My kids aren’t ready though.”

Dianne’s 20-year-old daughter Klarissa sits by her mother’s bedside. She casts her eyes to the floor. “They’ve given us about two months. But they can’t really say for sure.”

Just a couple of years ago, after heart disease, cancer was the third ranked killer of Australian Aboriginals and Torres Strait Islanders. Having recently risen above kidney disease – it’s now the second.

Though there are no hard facts as to when cancer first began affecting Aboriginal Australia, scientists link its increased appearance to improved life span. “It’s only recently that we’ve learnt about cancer in the Indigenous population, but that’s not because the disease wasn’t there,” says Associate Professor Patricia Valery from the Menzies School of Health Research.

“Earlier on people were dying from infectious disease, such as measles, cholera, flu and tuberculosis. As life expectancy improves, we’re starting to see more cancer.”

Getting a handle on how widely cancer’s made its mark among this group has been testing, owing to the fact that cancer registries didn’t use to identify patients by their ethnic background.

For the past eight years, Valery and her colleague Associate Professor Gail Garvey have been filling in the blanks. As Garvey says: “What really stands out is that the likelihood of an Indigenous person getting cancer is similar or even lower to that of a non-Indigenous Australian. But the mortality rate is far higher. There are lots of question marks as to why this is. That’s our journey. To try and work this puzzle out.”

On a wet Brisbane morning, Valery and Garvey – the latter of whose family originate from Kamilaroi country in northwest New South Wales – discuss the reasons behind this disadvantage.

A key reason, as in Dianne McCarthy's case, is late diagnosis. Indigenous cancer sufferers often have multiple health issues, making it hard for GPs to detect the disease in the first place. And as this group are up to ten times more likely to live remotely than are non-Indigenous Australians, access to healthcare is often difficult.

Garvey says: “Chemotherapy, radiotherapy and surgery are the three most common treatments for cancer. From our research in Queensland we know that Aboriginal and Torres Strait Islander people are less likely to receive these.”

“And having radio and chemo often means additional costs for transport and accommodation, and being away from family. So even just accessing treatment is a challenge.”

Garvey and Valery report there’s also a lack of open discussion and general awareness of cancer in many communities. “There’s no Aboriginal word for cancer,” says Garvey. “They see cancer as death. So it’s not talked about. It’s kept very quiet.”

A review by Dr Sophia Koefler from James Cook University in Queensland confirms this assertion. She cites a study of Western Australian Indigenous people interviewed about their attitudes and beliefs towards cancer. Its findings were surprising.

“Many Indigenous people believe cancer is contagious. They attribute cancer to spiritual curses, bad spirits or as punishment from a past misdeed,” she writes. “In addition, the Indigenous cancer sufferer may feel ashamed of their ‘wrongdoings’ and hide their symptoms, delaying diagnosis.”

When an Indigenous person develops cancer it’s often one of the more fatal varieties, too. Valery says this is partly due to lifestyle. Lung and liver cancer feature prominently among the group, which can be linked to smoking, chronic (long-term) infection with hepatitis B virus and high alcohol consumption.

According to figures reported by the Cancer Council, Indigenous lung cancer mortality rates here are 3.6 times higher than non-Indigenous rates. And in 2003, Indigenous Australians were 12 times more likely to die of hepatocellular carcinoma (HCC, the most common type of liver cancer) than the general population.

With late diagnosis, poor awareness and difficulties surrounding care considered, Garvey and Valery believe that one of the keys to turning the high cancer death rates around is focusing on the first year post-diagnosis.

“In that year, Aboriginal people have a 50 per cent higher chance of passing away than a non-Indigenous person does. But if they make it through to the second year – survival rates are about the same.”

The keys messages, they say, are for patients to take up cancer screening, seek medical help early if they have symptoms, adhere to treatments and attend appointments. More broadly, Valery and Garvey say there’s a strong need to raise GP awareness and training and develop large scale, Indigenous-specific prevention programs surrounding smoking and alcohol intake.

“Until now cancer has not been a high priority on the Indigenous health agenda, despite the number of deaths it brings about,” Garvey says.

That fact, however, is changing rapidly. Just three months ago, the researchers received funding for a Centre for Research Excellence – in cancer and Indigenous peoples.

“This will allow us to bring together key researchers, practitioners, and consumer advocacy groups from across Australia,” says Garvey.

More specifically, the Centre has a number of aims – each of them historic, ambitious and wide-ranging in scope.

Key to these is launching the National Indigenous Cancer Network (NICAN) in partnership with the Lowitja Institute, the Australian Indigenous Health InfoNet and Cancer Council Australia. This will ensure research data and cancer knowledge is shared nationally, and thereby cancer is tackled collaboratively.

“At present, cancer initiatives and research largely operates with state-based borders. So, we’re trying to share and build upon the activities cancer researchers are doing at a national level,” she says.

“Instead of us doing something here in Queensland and something different happening in the Northern Territory and New South Wales, we’re aiming to work together more closely. That way we can grow from we already know and get better data about what to do about lowering cancer diagnoses and deaths.”

Specifically, Garvey and Valery intend to work with partners to ensure the latest, nationally collated information is available to researchers, practitioners and families. The four organisations will also combine heads to develop a strong, forward-looking cancer research strategy.

While the Centre will address all types of cancer, it will also pursue cancer-specific initiatives, such this one that relates to cervical cancer:

“We’ll conduct Australia’s largest ever data linkage project – Indigenous or non-Indigenous – linking cervical screening data with hospital data and cancer registry data. This will investigate Indigenous women’s participation in cervical screening , comparing it with non-Indigenous women, and we’ll also examine whether follow-up after an abnormal Pap test result varies by Indigenous status, remoteness of residence, and socioeconomic status,” says Garvey.

“Most importantly, the Centre will allow us to train a new generation of researchers – including Indigenous researchers - in Indigenous cancer control. Lifting the cancer burden will have a huge impact on families, individuals and health services.”

As the researchers pack up their documents and prepare to get on with the rest of their day, the rain continues to fall in Queensland.

In the Northern Territory, Dianne McCarthy grows weaker. While this forward-looking news may be too late for her, McCarthy's case underlines one of Valery and Garvey’s key messages: the importance of catching cancer early.

As McCarthy says: “I smoked most of my life, but I tell my kids this: quit now. You don’t have to die young.”

What else is Menzies doing to reduce the cancer burden in Indigenous Australia?

• We’re investigating unmet supportive care needs of Indigenous Australians diagnosed with cancer in Queensland
• We’ve begun a study to test the effectiveness of an intervention combining patient navigation, cancer education and communication coaching to improve Indigenous cancer patients’ experiences through their cancer journey and their cancer outcomes. Cancer Australia has provided initial funding for this project; further funding will be sought in 2013.
• There are gaps in research regarding what happens to Indigenous people with a cancer after they are discharged, as well as how they use services in the Primary Health Care setting. We have been funded by the National Health and Medical Research Council (NHMRC) to investigate that gap, and to develop an audit tool for cancer care with a focus on culturally appropriate support, follow up and communication between health care systems.