New research reveals Aussie stigma towards lung cancer

The mother-of-three, who had never smoked, said the diagnosis – combined with the stigma surrounding the disease – was tough.

‘’When you tell someone you have lung cancer the first question is ‘Do you smoke’,’’ she said. ‘’If you say no, the next question is ‘When did you give up’.

‘’If you tell them you have never smoked they start quizzing you on what you think caused it, and ask whether it’s terminal.

‘’It’s only after this barrage of questions that they think to say ‘I’m sorry you’re dealing with that’, which is the first thing they’d say to someone with any other cancer.’’

A new survey released by the Lung Foundation Australia on Thursday reveals that stigma surrounding lung cancer is rife.

More than a third of Australians surveyed believed people living with lung cancer were their ‘’own worst enemy’’ who ‘’have only themselves to blame’’. One in 10 felt that those with lung cancer ‘’got what they deserved’’.

And despite one in three women diagnosed with lung cancer – and one in 10 men – having no history of smoking, the research found almost 90 per cent of those surveyed believed smoking was the only lung cancer risk factor.

‘’That’s why I’m trying hard to educate people that the only thing you need to get lung cancer is a pair of lungs,’’ Mrs Allen said.

‘’Because of my age and the fact I was a non-smoker, it took six months for me to get diagnosed in 2010 despite a persistent cough that wouldn’t go away.

‘’I was diagnosed with everything from asthma to possible whooping cough, before I had a CT scan that confirmed I had a mass in my right lung.

‘’Then I was given a 10 per cent chance of living beyond two years.’’

However radiotherapy and chemotherapy enabled Mrs Allen to remain symptom free until 2013, when a tumour was found in her left lung.

After surgery and further treatment, genetic testing determined that she had a rare mutation called ALK (Anaplastic lymphoma kinase).

Eight months ago she was accepted onto a clinical trial of a targeted therapy – a tyrosine kinase inhibitor – at Royal North Shore Hospital and is now in remission.

‘’When I was diagnosed it was horrendous – I had to sit my three young children down and tell them, because at that stage it was believed to be terminal,’’ she said. ‘’Today there’s no evidence of the disease in my lungs, and while the diagnosis remains ever present for me, I’m able to live a normal life.’’

However Mrs Allen said people’s negative attitudes had repercussions – with less funds raised for research into the disease, which kills one Australian every hour. 

‘’It’s easy to raise funds for research into breast cancer; it’s extremely hard to raise funds for lung cancer,’’ she said. ‘’Regardless of lifestyle choices no-one deserves this disease, and everyone deserves to have access to life-saving drugs to fight it.’’

Lung Foundation Australia released the survey findings on Thursday, ahead of Lung Health Awareness Month in November.

‘’Our research shows it’s clear we still have a lot of work to do when it comes to breaking down the stigma that lung disease carries. We must remember that lung disease can affect anyone,’’ CEO Heather Allan said.

‘’We don’t lay blame or judgement on people diagnosed with other cancers or chronic health conditions that can be caused by lifestyle choices – it should be no different for lung disease.’’

The foundation also surveyed its members currently living with lung conditions. A third said they felt isolated; almost one quarter felt shame, guilt or fear of being discriminated against; while just over 40 per cent felt stigmatised by the view lung diseases were self-inflicted.

‘’We are also calling on the Federal Government to ensure that adequate access to proven medications, policy and funding is available to enable early diagnosis, rapid referral and psycho-social support for those affected – given the scale of the issue,” Ms Allan said.