Lung cancer patients desperately need support. Here’s where they can get it

Lung cancer is responsible for almost one in five cancer deaths in Australia. It kills more Australians than breast cancer and ovarian cancer combined every year. But despite its common nature, people don’t often talk about it and if they do, it doesn’t tend to be in the usual sympathetic terms used when discussing a serious illness.

Even those who experience lung cancer often keep their condition quiet. That’s because of the misconception that all lung cancer patients are or were smokers and so are in some way to blame for their illness.

Sound over-the-top? Not so. Research conducted in 2019 by the Lung Foundation Australia found that 35 per cent of people questioned thought that people with lung cancer were “their own worst enemy” who had “only themselves to blame” for their condition. Almost 40 per cent said the first thing they would say to someone who had lung cancer – even before expressing concern for their health – would be to ask whether they had smoked.

Wendy, who was diagnosed with non-small cell lung cancer (NSCLC) in May 2016, experienced this ill-informed attitude first hand.

Living with the stigma of lung cancer

Wendy, who asked that we withhold her surname, says she had to learn how to deal with insensitive reactions to her illness.

“It is absolutely awful because the very first thing anybody asks is ‘are you still smoking’. I didn’t even get ‘do you smoke’, it was just ‘are you still smoking’. And I’ve never smoked and I’ve never lived in a household of people that do smoke, so it’s not even second-hand smoking, it’s just bad luck,” she recalls.

“So now if anyone asks what type of cancer I have, I always say ‘I have lung cancer but I’ve never smoked cigarettes’, and put it out there so people don’t ask the question. [But] because of the stigma you don’t tend to tell people.”

Wendy is one of the 21 per cent of those living with lung cancer who are life-long non-smokers. The truth is that smoking is far from the only lung cancer risk – genetics, pollution and occupational exposure can all heighten a person’s likelihood of developing lung cancer.

Wendy’s introduction to the condition was particularly brutal. The 64-year-old had had surgery to have a gastrointestinal tumour removed when her surgeon casually pointed out that the tumour in one of her lungs had started to grow and needed some attention. That was news to Wendy.

“I was never aware, no one had ever told me that I had a tumour in my lung,” she remembers. “So we were all a bit shocked. My husband was beside himself.”

Wendy was directed to a thoracic surgeon who diagnosed her with NSCLC, the most common form of lung cancer, which accounts for about 85 per cent of cancer cases. Three weeks later, she had surgery to attempt to remove the tumour, and has had two further surgeries since. She will be back at her oncologist’s office at the end of this month to discuss more treatment options, however, as another cancerous tumour has been found in her lungs.

Vital support for people living with lung cancer

She says at the time of her 2016 diagnosis, there was little support available from the healthcare system to help her come to terms with this new and frightening threat to her health. “Apart from the surgeon, there was no one else to talk to,” she says.

“I think that the first thing that anyone does when they get a diagnosis is look up Dr Google, although it’s not always accurate, but that’s how I found the Lung Foundation Australia,” she says. “I didn’t get a pamphlet at my surgeon or anything like that.”

Wendy booked a free appointment with a oncology nurse from the Lung Foundation Australia.

“I contacted the nurse with all my questions and she was wonderful,” she says. “I’m just so sad we don’t have them everywhere.”

The Lung Foundation Australia provides no-cost telephone appointments with lung cancer support nurses to patients, their families and carers at any stage of the lung cancer journey. These experienced nurses can provide evidence-based information on diagnosis, treatment and managing the symptoms of lung cancer, but also support the wellbeing of patients and their loved ones.

Wendy says that support was invaluable “because emotionally, it’s quite an arduous journey, not just the surgery and the treatment, but just the fact that you have lung cancer”.

“It’s not one of the ‘sexy’ cancers,” she adds. “So the support of your family and friends is everything, and the Lung Foundation Australia has been wonderful.”

How the Lung Foundation Australia can help you

Lung cancer support nurse Nicole Parkinson says half of all Australians living with lung cancer experience distress, anxiety or depression – a significantly higher rate than seen in people diagnosed with other types of cancer.

“Being told you or someone you love has lung cancer can have a significant impact on you and your family, and helpful information can sometimes be difficult to find,” she tells Starts at 60. “Here at Lung Foundation Australia, we want you to know you are not alone. We’re here for you and provide a range of services and programs to support you to live your best life.”

Appointments with a nurse like Nicole can be made online or by phone. Lung Foundation Australia also offers confidential phone-based support groups and other support programs that help people with lung cancer connect with others experiencing the same challenges.

“Whether you’re newly diagnosed or have been living with lung cancer, or any lung condition, for some time, the team at Lung Foundation Australia can help find something that suits your needs,” Nicole says.

IMPORTANT LEGAL INFO This article is of a general nature and FYI only, because it doesn’t take into account your personal health requirements or existing medical conditions. That means it’s not personalised health advice and shouldn’t be relied upon as if it is. Before making a health-related decision, you should work out if the info is appropriate for your situation and get professional medical advice.