'I'm a former GP - I didn't know this was a symptom of lung cancer'

A former GP who "never smoked" has spoken of the one symptom she didn't know about - after being diagnosed with lung cancer more than a decade ago.

It comes as the Roy Castle Foundation, the UK's only lung cancer charity, calls for an end to the lasting association of the disease with being a smoker. The charity's CEO, Paula Chadwick, said: "The reality is anyone can get this disease, regardless of if they have smoked or not."

The disease has long been associated with smoking, and in particular, a smoker's cough - so that it may not even be on the radar of people who have never lit up.

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As a former GP, Sally Hall from Oldham, was fully aware of the most common signs of lung cancer – shortness of breath, repeat chest infections and an ongoing cough. So, when Sally started to experience back pain, the possibility of it being lung cancer never occurred to her.

“I had been clearing out the garage,” said Sally. “I remember hauling out some crates of old ceramic tiles, so it wasn’t surprising that my back started hurting.

“The pain persisted though, so after a couple of months, I went to my GP and a physio. What happened next felt like a complete bolt out of the blue."

Tests showed Sally had a tumour in her lung. She also had two spinal metastates which were causing her spine to collapse.

Sally required spinal decompression and stabilisation surgery, followed by spinal radiotherapy. During this time, doctors took a biopsy which later confirmed she had a type of lung cancer called EGFR+ with the Exon 19 mutation. “I was told if untreated, I wouldn’t be here long,” she said.

After her surgery, Sally started on erlotinib, the targeted cancer drug which she remains using ten years later. Subsequent scans showed the tumour to have shrunk significantly, at which point a lobectomy - the removal of one of the lobes of the lungs - was put forward.

"This wasn’t usual practice for metastatic disease, but my consultants believed it was right course of treatment for me," she said. "Psychologically, for me, it was good for to get rid of the primary tumour."

"I have been incredibly fortunate with my treatment – although it feels like I have experienced every possible side effect. There’s also the security of knowing there are other tools in the toolbox should I ever need them, with new breakthroughs coming all the time."

Ten years on, and Sally’s cancer remains stable. She has learned to manage her disease and the side effects of treatments, as well as sharing her experience to raise much needed awareness.

“Having never smoked, lung cancer was not something that I thought I’d experience,” concludes Sally.

“It’s incredibly important for me, and others like me, to share their stories. We need to make everyone aware that if you have lungs, you can get lung cancer and equally, even with a late-stage diagnosis like mine, there is still hope.

“Living with incurable lung cancer changes your world and makes you alter your expectations. I have pretty much every side effect you can imagine – from dry eyes and skin to diarrhoea and crazy hair – but with support I have learned to live with them."

Using Sally's story as an example, the Roy Castle Lung Cancer Foundation 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.

“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," said the charity's CEO Paula Chadwick. "That is why we are calling for a stop to these archaic labels. Lung cancer doesn’t see them, and neither should we.”

The Roy Castle Foundation started life as the Lung Cancer Fund, set up in Liverpool in 1990. It was renamed the Roy Castle Foundation in 1993, when British entertainer Roy Castle agreed to raise £12 million to set up a centre for lung cancer research.

Castle had been diagnosed with the disease around the same time. Himself a lifelong non-smoker, he attributed his illness on passive smoking after years of performing in smoky clubs.

He died of the disease in September 1994, after which his widow Fiona continued to work with the charity and campaigned for the smoking ban, which successfully banned smoking in all enclosed public spaces across the UK by 2007.