WHEN someone is diagnosed with lung cancer, the first thing both doctors and well-intentioned loved ones ask is, “Well, did you smoke?”
About 90 per cent of lung cancer in males and 65 per cent in females is estimated to be the result of smoking. Those outside these percentages understandably feel the need to justify their illness.
Last week, Channel Seven sports reporter Mel McLaughlin opened up about the death of her older sister Tara, who died last year from lung cancer.
“Her lung cancer was as a result of a genetic mutation — she was not a smoker,” she told The Weekend Australian.
“People say, ‘Oh, lung cancer’ and they’re thinking she must have deserved it — no one deserves it, she never smoked a day in her life and she had two young boys.”
Last September, the principal of the prestigious Sydney private school Wenona, Briony Scott, who is married to the ABC managing director Mark Scott, was diagnosed with lung cancer at age 52.
In a letter to staff and students announcing her diagnosis, one of the first things she wrote was: “I don’t smoke, nor have I ever smoked — this is just one of those things that happen in life.”
Lung cancer accounts for the highest average number of cancer-related deaths and is one of the least funded cancers in the world, according to the Australian Institute for Health and Welfare. More than 11,500 Australians are diagnosed with the condition each year.
Margaret Parker, 55, from the Gold Coast, has smoked for 40 years and was diagnosed with lung cancer at age 50.
One of her daughters, Grace, 14, also has the disease. Both Grace and Mrs Parker were diagnosed within a period of about six months in 2012. Mrs Parker’s father died of lung cancer in his 30s.
But her doctors say her cancer, and her daughter’s, is caused by a rare genetic defect.
“I tested negative for smoking and environmental causes. We don’t know what the gene is. That’s what the research is trying to find out, but there is very little money allocated to lung cancer research,” Mrs Parker told news.com.au.
“Do you smoke?” is one of the first questions people ask Mrs Parker when they hear about her condition.
“I was embarrassed for my girls, because they were told ‘Obviously you’re too young to smoke, but your mother must have caused it’.
“My own mother had breast cancer, but not one person said to her ‘Did you smoke?’ Everybody is happy to donate money towards breast cancer research, but with lung cancer, nobody gives a damn,” she said.
CEO of Cancer Council Australia, Professor Sanchia Aranda, says some cancer patients engage in “self blaming”, which often leads them to delay treatment because they’re concerned about people’s reactions.
“We’re starting to see a bit of that with cervical cancer, because it’s linked to the HPV virus, which is transmitted through sexual intercourse,” said Prof Aranda.
“The stigma isn’t as strong as the one attached to lung cancer, but some patients do worry that they’ll be perceived as promiscuous.”
Grace and her mother have a rare genetic condition.
Kelly Brae*, 28, from Sydney, was diagnosed with Type 1 diabetes at age 25. It’s a genetic condition and doctors still don’t know what caused it.
Out of the three million Australians who are diabetic or pre-diabetic, 120,000 of those have Type 1 diabetes. Type 2 diabetes is associated with lifestyle factors, including a poor diet and lack of exercise. Most people who are diagnosed with diabetes later in life are diagnosed with Type 2.
“People are surprised when I tell them I’m diabetic,” said Ms Brae. “They say things like ‘Oh, but you’re really healthy?’ There’s an assumption that if you’re diabetic you’re unhealthy, a bit overweight. There’s such a stigma around it.”
That stigma often prevents her from checking her blood sugar levels and injecting insulin, as required.
Most diabetics must check their levels six to eight times a day, by pricking their fingers and testing the blood extracted. They inject insulin once upon waking — a big shot to last them 24 hours — and have subsequent injections before main meals.
“I recently went on a hike with a big group, some of whom I wasn’t that close to,” said Ms Brae.
“It was quite an exerting hike and I wasn’t sure about my levels. But I didn’t want to stop the entire group and say ‘Can we stop because I need to check my blood sugar?’ It can be hard if you don’t know people,” she said.
“I’m used to it by now, but it can be hard to do. If I’m at work I typically go to a bathroom to do it, because I wouldn’t want to do it at my desk.”
Two thirds of people living with diabetes don’t always check their levels as recommended, say they feel like “robots” and wish they could take time off from their condition, found the YourSAY: Glucose Monitoring Survey, which was commissioned by health care company Abbott, the Juvenile Diabetes Research Foundation (JDRF) and Diabetes Australia.
“If diabetics feel their blood sugar is too high or low, they might need to check their levels in a meeting, on public transport or a plane,” said the CEO of JDRF, Mike Wilson.
“Even with the best management, things still come up unexpectedly and you need to be able to check your blood sugar quickly. Sometimes it’s quite an isolating disease if people feel uncomfortable sharing that with people,” he said.
