Challenging patient stereotyping in lung cancer

When asked who gets lung cancer, we are usually met with the same response – older people, typically men, who smoke and/or worked with asbestos or in other occupations where you are exposed to dangerous substances.

There is some truth in this. People who have smoked are at highest risk of developing lung cancer. The average age of lung cancer patient is 72. And currently, more men are diagnosed than women (although latest projections indicate the number of women diagnosed with lung cancer in the UK is expected to overtake men this year for the first time).

However, the full truth is if you have lungs, you can get lung cancer – regardless of your age, occupation and smoking history. It is time to lose these outdated misconceptions and expectations and follow the symptoms.

Natasha was just 49 years old when she received her diagnosis. At the time, she was a primary school teacher who loved to hike, run and do yoga. She ate a predominately plant based diet and didn’t smoke.

Whilst Natasha’s route to diagnosis cannot be faulted (her GP immediately sent her for a chest x-ray when she presented with symptoms), the length of time it took to reach a conclusive diagnosis felt longer than necessary.

It was clear there was something going on but lung cancer never seemed high on the list of possibilities. The doctors thought it was maybe infection, even TB. They kept reassuring me that it was highly unlikely that it would be lung cancer because I didn’t fit ‘the profile’.

Natasha was eventually diagnosed with stage 4 EGFR+ lung cancer and is now on a targeted therapy which has shrunk her tumours considerably.

The many different lung cancer symptoms

Whilst many people can understand how a persistent cough or shortness of breath could be signs of lung cancer, there are many other symptoms that can also point to the disease. This can be tricky to decipher, and even more so when the person experiencing them does not match ‘the profile’.

Jules and Petra are living with late stage lung cancer

Jules’s story

On their own, Jules’s three symptoms – back ache, shoulder pain and a lump in her neck – could easily be attributed to other, less sinister causes. However, when put together they can be a strong indication of lung cancer. Sadly for Jules, the pieces weren’t connected as quickly as they could have been. Jules believes her age and lifestyle played a part in the delays she faced.

I think lung cancer is very much associated to men, or maybe someone who was a heavy smoker, or that worked in the asbestos industry. Certainly not someone like me – 37 years old who had a relatively health lifestyle. I think this is why my symptoms weren’t put together and why I wasn’t scanned sooner.

Like Natasha, Jules is currently being treated with a targeted therapy for stage 4 EGFR+ lung cancer. She is now nearly two years into her diagnosis and responding well to treatment.

Petra’s story

Petra too was a non-smoker who was currently training for a long-distance swim, so when she started to get a pain in her shoulder, she naturally attributed it to that. Her doctor presumed the same, but when the pain grew worse, Petra paid for a private MRI scan. The results came as a huge shock.

At 54 and someone who exercised, ate well and didn’t smoke, lung cancer was not a cancer I thought I was ever likely to experience. And to not have any respiratory-based symptoms, was also very confusing. If you have lung cancer, you would expect to have a cough, or be short of breath.

The type of lung cancer Petra has is EGFR+ with exon 20 insertions. At the moment, there is no targeted therapy for this specific lung cancer mutation so Petra is receiving immunotherapy.

Lung cancer sliding doors

There are key moments during a lung cancer diagnosis which can prove crucial. They can be the difference between an early stage and a late stage diagnosis. They can be the difference between curative treatment and palliative care.

Dave and Spike had very different lung cancer experiences and outcomes

Dave’s story

Dave was aware that a persistent cough was a symptom of lung cancer – he’d seen the TV ads. As a non-smoker, he didn’t think it applied to him, even though his cough was so severe, it caused a hernia! A chest infection, and even pneumonia, seemed a much more likely cause.

But when, several months later, his cough remained, Dave (with some much needed encouragement from his partner, Emelie) sought out a second opinion and was sent for a scan. This act of self advocacy may well have saved his life. Dave had surgery and chemotherapy and is now approaching two years all clear… but it was the closest of calls.

I had a 7.8cm tumour in my left lung and was told if it had reached 8cm, it could not be operated on. It’s a sobering thought to realise how close things got.

Spike’s story

Spike’s experience is somewhat different to Dave’s. In 2017, Spike went through a period of having recurrent chest infections. He ended up having 8 weeks of antibiotic and one chest x-ray. This came back clear and no further action was taken. The infections eventually stopped so Spike presumed all was fine.

I have always been supremely fit and healthy. I enjoyed daily gym workouts and did 5ks for fun. I have never smoked and had no underlying health conditions, so it’s safe to say lung cancer was never at the front of my mind – even when I started to experience symptoms.

The following year, Spike felt a sensitive ache in the back of his right shoulder blade and down his arm following a routine daily gym and swim session. Spike went on to be diagnosed with stage 4 ALK+ lung cancer with a secondary brain tumour. Thankfully, his treatment is working well and he is approaching five years since his original diagnosis.

Forget everything you think you know about lung cancer

As these five stories – and the many other experiences – show, no one is immune to lung cancer. It is a vital message at the heart of the Be Unforgettable campaign and one we will continue to share far and wide so everyone has the opportunity to be diagnosed as soon as possible.

So, even if you think lung cancer is something that could never affect you, never presume. If you are experiencing any potential symptoms, seek out help and be persistent. Ask for a second opinion, push back on repeat antibiotics and demand thorough investigation. In short, be unforgettable.

Share your lung cancer experience

If you have a story to tell, we’d love to hear it. Help us dispel the misconceptions of lung cancer and ensure everyone is diagnosed as soon as possible.