With UK lung cancer survival rates continuing to lag behind other developed nations, it’s clear something is fundamentally wrong in our approach to diagnosing this disease.
Lynn and Gordon Handley certainly think so.
Their son, Liam, had been labelled many times in his life. His red hair had been the centre of many a joke from early years right through to his adult life. This, along with his dyslexia, made him feel very self-conscious.
Liam suffered with anxiety for much of his life, so when he first went to his doctor with chest pain, his GP put his symptoms down to stress and increased his medication.
But the pains didn’t subside. Liam kept going back to his GP, but each time just had his medication increase further. At no point was Liam referred for a chest x-ray. Fast forward many months, Liam was diagnosed with incurable lung cancer. He passed away just over a year later.
Let go of the stereotype
“I don’t think lung cancer was ever considered,” said Lynn.
Liam did not fit the stereotypical lung cancer patient. He was young, relatively fit and he did not smoke. It certainly wasn’t in our heads. But it wasn’t in the GP’s either and herein lies the problem.”
Unfortunately, stories like Liam are far from isolated incidents. Lengthy delays, particularly amongst people who have never smoked, are something leading lung cancer charity, Roy Castle Lung Cancer Foundation hears time and time again.
Chief executive, Paula Chadwick, says: “The sooner lung cancer is caught, the more treatment options – including curative treatment – a person has. So, when we hear a story like Liams, where there were clearly missed opportunities to diagnose earlier, it’s vital we understand what went wrong.”
For Liam, and everyone with lung cancer
Inspired by Liam’s story and the many others like it, the charity has launched its Let Go of the Labels campaign for lung cancer awareness month, calling for a stop to terms like smoker and never-smoker.
“Lung cancer is still so intrinsically linked to smoking,” explains Paula Chadwick, chief executive of Roy Castle Lung Cancer Foundation, “but the reality is anyone can get this disease, regardless of if they have smoked or not.
The more people we spoke to, the more we recognised that labels like smoker and non-smoker were having a direct impact on how quickly people were being diagnosed.
“If a person has smoked, they can feel more reluctant to seek help because they feel ashamed or guilty, or their symptoms are directly attributed to smoking.
“Meanwhile, if someone hasn’t smoked, they often aren’t referred as quickly for tests as they could have been because they don’t fit the idea of who we expect to have lung cancer.”
After learning about the campaign, Lynn and Gordon were keen to get involved.
“We can only think that the label of non-smoker worked against Liam,” believes Gordon. “The fact that he didn’t smoke clouded the doctor’s view, so lung cancer was never considered. Now we’re left with so many questions and his children will grow up without their dad.”
The importance of early detection
Every year, 48,500 people are diagnosed with lung cancer in the UK, with around a third of cases unrelated to smoking.
Early diagnosis is key. When a person is diagnosed with early-stage lung cancer, they are 20 times more likely to still be alive five years later.
However, only 13% of those diagnosed with lung cancer in the UK currently achieve that milestone, compared to 18% in Germany, 21% in the USA and 33% in Japan[1].
A very close call
Dave Marcus is one of those 13%. But it was very nearly a different story.
Dave had seen the adverts about how a persistent cough could be a sign of lung cancer. But as someone who had never smoked, Dave presumed it didn’t apply to him and it almost cost him his life.
It took 7 months, several appointments and a cough-induced hernia, for Dave to eventually be diagnosed. He was told his tumour was 7.8cm in size. If it had grown another 2mm, surgery would no longer have been an option.
“It’s a sobering thought to think how close things got,” said Dave, “and so much of that is down to the perception of lung cancer – or lack of understanding around this type of cancer.
I was so focused on the fact that I had never smoked that I, unintentionally, ignored the clearest of warning signs – a persistent cough.
“It’s definitely time we stop thinking about lung cancer in this way. I am proof that it can happen to anyone and catching it early means there’s life after lung cancer.”
Paula concludes, “We need to do everything we can to ensure everyone with lung cancer is diagnosed as quickly as possible.”
“Labels like ‘smoker’ and ‘never smoker’ can distort what’s really going on and stop people getting diagnosed earlier.
“It’s time to let go of these archaic labels. Lung cancer doesn’t see them and neither should we.”