Too much focus on 'archaic' smoking status leading to late lung cancer diagnoses, charity warns

ITV Granada Reports journalist Tasha Kacheri met Liam's parents to tell his story, with Rachel Avery, from Roy Castle Lung Cancer Foundation, speaks about the importance of their campaign

Focusing too much on smoking status when someone has lung cancer symptoms could lead to people not getting diagnosed as quickly as they should, a charity has warned.

The "smoker" and "non-smoker" labels given to those who complain of symptoms has a "direct impact" on the speed at which the illness is detected, Roy Castle Lung Cancer Foundation claims.

The charity claims smokers can be reluctant to get symptoms checked due to feelings of guilt or shame, while those who do not smoke may not be offered the relevant tests and checks to rule out cancer.

Gordon Handley, whose son Liam died in 2021, believes his status as a non-smoker "worked against" him and contributed to delays in his treatment - with his lung cancer symptoms simply put down to stress.

Liam, from Glossop, suffered from anxiety and when he visited his GP with chest pains he was told they were caused by stress.

After nine months of worsening symptoms the dad-of-four was diagnosed in August 2020 with advanced lung cancer which had spread to his spine, liver and lymph nodes.

Liam died in 2021. His father Gordon believes his status as a non-smoker “worked against” him and contributed to delays. Credit: Family picture/Roy Castle Lung Cancer Foundation

Mr Handley, and his Liam's mother Lynn, are now backing the campaign by Roy Castle to end the focus on the labels.

“I don’t think lung cancer was ever considered," Lynn said.

“Liam did not fit the stereotypical lung cancer patient, he was young, non-smoker, not overweight and relatively fit.

“It certainly wasn’t in our heads, but it wasn’t in the GP’s either and herein lies the problem.”

Mr Handley added: "It was never mentioned, it was just 'well you are a young, fit person, non-smoker and it can only be your busy life, you're up early, lots to put up with, anxiety."

It was only when Liam, who was a chef, became so breathless he almost collapsed that his dad made the decision to take him to the local hospital, but he was diagnosed with blood clots on his lungs, and no further tests were undertaken.

Liam went back to hospital three more times complaining of pain in his legs and chest, but he was sent home each time with no investigations.

It took Liam's family booking a private CT scan and private appointment for them to finally diagnose his stage four cancer.

He initially responded well to treatment, but started to get chest pains again in April 2021.

Scans showed his cancer was growing again and he died in October that year, aged 37.

"We were upset, angry, that all this time we were pushed away," Mr Handley said. "We feel guilty ourselves for not thinking outside the box, but you go to your doctors, you go to your hospital, you're guided by them, that if nothing else, you've got to go with your gut instincts."

The campaign has been backed by the parents of a man whose lung cancer symptoms were put down to stress – because he did not smoke. Credit: Family picture/Roy Castle Lung Cancer Foundation

The foundation estimates there are about 48,500 people diagnosed with lung cancer every year in the UK, with about a third of cases unrelated to smoking.

According to Mr Handley, the fact Liam was a non-smoker “clouded the doctors’ view”.

He said: “We can only think that the label of non-smoker worked against Liam.

“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.”

Roy Castle Chief Executive Paula Chadwick added: “The sooner lung cancer is caught, the more treatment options – including curative treatment – a person has.

“So, when we hear a story like Liam’s, where there were clearly missed opportunities to diagnose earlier, it’s vital we understand what went wrong.”

Liam leaves his partner and four children behind. Credit: Family picture/Roy Castle Lung Cancer Foundation

The charity’s Let Go Of The Labels campaign is calling for an end to terms such as smoker and never-smoker when it comes to lung cancer diagnosis and treatment.

“Lung cancer is still so intrinsically linked to smoking but the reality is anyone can get this disease, regardless of if they have smoked or not,” Ms Chadwick said.

“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.”

Roy Castle Lung Cancer Foundation is calling for an end to the "archaic" smoking status labels when it comes to lung cancer. Credit: PA Images

Dave Marcus, from Cheshire, was diagnosed with lung cancer in November 2021, when he was 54.

He had been suffering from a persistent cough, which he was aware can be a symptom of lung cancer, but thought it did not apply to him as a non-smoker.

When he was diagnosed, he had a 7.8cm tumour.

Mr Marcus, now 57, said: “It’s a sobering thought to think how close things got, 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.”

Ms Chadwick added: “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.”

Signs and symptoms of lung cancer

The most common symptoms include:

  • A persistent cough (that lasts for three weeks or more)

  • Feeling breathless for no reason

  • Repeat chest infections or chest infections that haven’t improved after having treatment

  • Losing weight and/or loss of appetite

  • Coughing up blood or blood in your phlegm (spit)

  • A cough that changes or gets worse

  • Unexplained tiredness or lack of energy

  • Chest or shoulder pain.

Less common signs include:

  • Back pain

  • Wheezing

  • A hoarse voice

  • Finger clubbing (where the tips of your fingers swell around your nail)

  • Difficulty swallowing

  • A swelling in your face or neck.

Some people with lung cancer may experience multiple symptoms, whilst others may only have one symptom.

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