8th June 2023

Lung cancer screening: our dedication is paying off

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As Gordon Darnell makes a cup of tea, you can’t help but notice the impressive array of magnets that adorn his fridge. From the Gold Coast in Australia to the colosseum in Rome, there’s a magnet from each corner of the world.

“We always buy a fridge magnet when we go somewhere new,” Gordon explains.

Since my wife and I stopped smoking, we have been able to take that money and go on some incredible holidays. We’ve been to Brisbane in Australia and in the Gold Coast twice. Lanzarote, Gibraltar, Madeira, and Portugal. We’ve been on two cruises, Dubai twice as well as Hong Kong and Singapore. That’s not including all the other places we’ve been across Europe!”

Gordon’s lung health check

Gordon quit smoking in 2012, with the support of our smoking cessation service FagEnds. Nine years later, he received a letter inviting him for a lung health check.

“It could have been really easy to ignore the letter,” Gordon recalls. “I was feeling really well – the best I had in years actually. I didn’t have any symptoms, and thanks to Roy Castle Lung Cancer Foundation, I hadn’t smoked in nearly a decade.

“However, I realised there must be a reason why I had been invited so I made an appointment. I saw it as an insurance policy. If there was nothing wrong – great! I hadn’t lost anything in checking. But if there was something, I wanted to deal with it as soon as possible.”

It turned out to be the best decision Gordon ever made. He went on to be diagnosed with stage 1a lung cancer on Christmas Eve 2021 and now shares his story as part of our campaign to improve uptake of the targeted lung health check programmes.

Lung health checks explained

Commissioned by NHS England, Roy Castle Lung Cancer Foundation has been tasked to deliver a two-phased campaign to help overcome the barriers that are discouraging those eligible from having the check up.

“Anecdotal feedback from the programmes has identified a number of reasons why people may not be booking their lung health check,” explains Rachel Avery, Director of Marketing and Communications at the charity.

“General lack of awareness of the programme is one. Often, the first people learn of the programme is when they receive a letter so they are understandably confused as to what they are being invited to. This then often leads to feelings of uncertainty and anxiety. Why I have I been invited? What if they find something? That element of fear also plays a significant part in deterring people from attending.

However, one of the biggest reasons we found was that people simply don’t believe they need the check up.

At the time of receiving the invite, they feel well and have no symptoms, so they understandably believe nothing wrong. We’ve all seen those adverts about a persistent cough, or breathlessness – or even our own awareness campaigns. If you have lung cancer surely you would have one of these symptoms, right?!

However, with very early stage lung cancer, there are often aren’t any clear and obvious warning signs. It’s all happening under the surface and, because there are no pain receptors in our lungs, alarms bells don’t always ring, or don’t ring as loudly as you would expect with a disease as serious as lung cancer. This is what we wanted to address in the first phase of the campaign.”

The team went on to develop a series of campaign messages and tools for all programmes in England to use, explaining the importance of attending a lung health check appointment – even if they feel well, of which Gordon’s first-hand account perfectly demonstrates.

“I honestly thought someone had made a mistake when I received my diagnosis. That’s how well I felt! When I realised they hadn’t, I was very frightened but the doctor explained that there were four stages of cancer and I was stage one – and the earliest stage of stage 1. That relaxed me immensely.

Because it was caught so early, I only needed keyhole surgery and eight weeks after my operation, I went on holiday to Spain. Three weeks after that, we went to Turkey. I wanted to go somewhere warmer so I could swim and start building my lungs back up.”

I almost feel like a fraud, especially when I speak to other people with cancer and the difficulties they face, or have faced. I didn’t experience any of that because my cancer was caught so early and I played my part by going for that check up. It would have been really easy to not bother because I felt so well but thank goodness I did. Now I’m urging others to do the same.

The importance of lung health checks

Whilst uptake of the programme is lower than we want, the early detection is beyond our wildest dreams. To date, around 1500 people have been diagnosed with lung cancer through the programmes, 76% of which are caught at stages 1 and 2, turning current rates on their head. These staggering results, along with similar studies across the world, undoubtedly led to the positive recommendation for a national screening programme for lung cancer.

The recommendation from the National Screening Committee came back in September 2022 and now sits with the Health Committees to approve and implement. Never one to rest on our laurels, this charity remains at the forefront of pushing this through and even prior to the recommendation, were campaigning for the implementation of national screening.

Charity ambassadors, Cathy Brokenshire and Fiona Castle, along with chair of the UK clinical expert group (CEG) for lung cancer and advisor to the national screening committee, David Baldwin, spoke to BBC Breakfast about why screening is so vital, sharing their own personal experiences and launching our #needtoscreen campaign.

Their words clearly resonated. Roy Castle trended on Twitter, and the charity was inundated with tweets of support.

We have since written to Secretary of State for Health and Social Care, Steve Barclay, asking him to respond to the recommendations of the National Screening Programme by committing to a national screening programme for lung cancer, using the targeted lung health checks to support its implementation.

Why is lung cancer screening only available to certain people?

We understand why many people are frustrated that the lung health checks, and proposed screening will only be available to those at the highest risk of lung cancer. Professor David Baldwin explains why this is currently the case:

“The primary reason why the current screening programmes for lung cancer is targeted is because people with very low-risk of developing the disease would likely suffer, on balance, more harm than benefit if they were screened regularly for lung cancer.

That said, we do have more modelling to do. We need to understand what improves the cost-effectiveness and allows you then to allow people into the screening programme at overall lower risk, in a cost-effective way.

A lot of this is about cost. You can’t get away from that, unfortunately, with the NHS and the way it runs. And if we didn’t have an NHS then it would be very inequitable; people with money would be able to afford it and the others wouldn’t. So, in some ways, we have to be constrained by that.

But dealing with the very low-risk group – currently, even with the new cost-effectiveness modelling, we need to know more about that group. We need to understand more about exactly when the cancer develops, whether there are any other risk factors that we can identify that might allow us to screen people who are both relatively young and at low risk. All of these sort of things need to be looked at.

I know there’s a lot of research being proposed at the moment in the never-smoking group and some more modelling work done in the next year or so, which may well suggest a change to the entry criteria for screening.”