After giving birth to her second child, Gini Harrison began experiencing what she thought was a minor inconvenience: shoulder pain. Like many new mothers, she assumed it was just a pulled muscle from the physical demands of breastfeeding.

Her doctors seemed to agree with this initial assessment, prescribing painkillers and reassuring her that the discomfort would eventually subside. However, as the months passed, the pain intensified instead of diminishing.

“The pain was getting unbearable,” Gini recalls. “I could barely lift my son to feed him, and eventually, I lost all use of my right arm.” As a psychology professor at the Open University, her condition was not only physically debilitating but also impacted her professional life.

Despite numerous consultations with general practitioners and sessions with a physiotherapist, relief remained elusive. Frustration mounted without a proper diagnosis, and Gini found herself making a joking remark that she never imagined would hit close to home. “I remember saying, at least you can’t get cancer of the shoulder,” she reflects, unaware of how significant that comment would become.

‘I had countless appointments with GPs and saw a physiotherapist, but nothing was making it better.

‘Without an answer, and still being in pain, I remember making a flippant comment – at least you cannot get cancer of the shoulder.’

Eventually, fed up with the endless back and forth with the NHS, she saw a shoulder specialist privately.

‘This was the first time I had seen a doctor in person, because it was the pandemic, and I remember him lightly pressing his hand on my shoulder and I jumped a mile,’ says the 44-year-old from Milton Keynes.

Gini Harrison with her husband Peter and children Michael and Emily. Just before Christmas 2021, Gini was told she had stage four lung cancer

She was immediately sent for an MRI scan, which revealed a tumour in her right lung.

And just before Christmas 2021, the first with her son, Gini was given the news that she had stage four lung cancer, meaning it had spread through her body.

‘I didn’t have any of the symptoms you would traditionally associate with lung cancer, I didn’t have breathlessness, coughing, or lung symptoms, it was just the shoulder pain,’ says Gini. ‘I was in complete shock when I was diagnosed.

‘I fell apart, my whole world came crashing down. With it being stage four, my initial reaction was that I was going to be dead in days. It was horrendous and all I could think about was how my kids would cope without a mother.’

It was determined that Gini, as a non-smoker, had a form of the disease triggered by a rare genetic mutation. Worse still, Gini’s lung cancer did not respond to standard treatments. Studies have shown that the average survival period for the type of cancer that Gini had is 17 months.

Specialists at Guy’s & St Thomas’ hospital opted for a combined course of chemotherapy and radiotherapy. ‘They took a chance on me,’ says Gini. ‘As the tumours were localised, they did the two treatments together, which is not something they normally do for my type of cancer.

‘It has been as successful as it could have been, and at the moment there is no measurable disease, which is amazing. I am doing really well now but I am still scanned every three months as a precaution. The doctors believe the cancer cells are still there but are not yet showing on scans. So at some point that might change.’

Worryingly, Gini is not alone. Of the 50,000 people diagnosed with lung cancer every year, around 7,000 are non-smokers, according to the Ruth Strauss Foundation – a charity founded by former England cricket captain Andrew Strauss following the death of his wife from non-smoking lung cancer in 2018.

Of the 50,000 people diagnosed with lung cancer every year, around 7,000 are non-smokers, according to the Ruth Strauss Foundation – a charity founded by former England cricketer Andrew Strauss following the death of his wife in 2018

And studies show that, even as smoking rates and related cancer cases decline, the number of patients diagnosed with the non-smoking form is rising.

Unusually, it’s women who are most affected, making up nearly seven in ten cases. Yet, estimates suggest around nine out of ten cases are diagnosed in the advanced stages of the disease, when it can no longer be cured.

Experts say this is because of the mistaken beliefs of GPs that young healthy patients, like Gini, don’t get lung cancer.

‘This rise in cases – particularly in young women usually in their 40s and often in people of Asian descent – is concerning,’ says Professor Hendrik-Tobias Arkenau, a research oncologist at University College London Hospital.

‘We are not quite sure why we are seeing this rise.

‘There are a number of theories that are being investigated, from air pollution to microplastics.’

One major risk factor for lung cancer in non-smokers is a mutation in the EGFR gene, which controls how cells grow and divide.

When this mutates, it can trigger uncontrolled growth and tumour formation, and it’s found in nearly a fifth of lung cancer cases in non-smoking women.

These mutations aren’t usually inherited, and lung cells carrying them typically lie dormant and harmless, which means potential patients cannot be identified before they fall ill. For this reason, experts say it is crucial that patients are aware of the symptoms of lung cancer.

‘If you are suffering from shoulder pain, unexplained weight loss, a persistent cough of more than two months or are coughing up blood, then you need to ask your GP to escalate and ensure tests are done,’ says Professor Arkenau.

‘Too often, GPs will not consider lung cancer in young non-smokers, and by the time they are referred on to a specialist, the cancer has metastasised and our options are limited – so it is important to be persistent if you think something is wrong.’