Patients with lung cancer who have never smoked are usually diagnosed too late for curative treatment. Pam Dalrymple, advanced clinical nurse specialist in lung cancer at NHS Greater Glasgow and Clyde, discusses how practice nurses can support these patients
It is well known that lung cancer is primarily associated with smoking. Almost three-quarters of all lung cancers are caused by tobacco smoke exposure, and the outlook is generally quite poor. According to Cancer Research UK, just 10% of patients survive for 10 years or more. That makes it all the more devastating that 79% of cases are preventable.1
Screening is a significant step forward in diagnosing people with lung cancer sooner, and hopefully saving more lives. A lung cancer screening programme was launched last year in England and a similar pilot scheme is under way in parts of Scotland – both targeting patients at highest risk of the disease: 55 to 74-year-olds with a smoking history.2
However, it is important to recognise that lung cancer is not only a smokers’ disease. Quite simply, if you have a set of lungs, you can get lung cancer.
Lung cancer in patients with no history of smoking
We are increasingly seeing lung cancer in non-smokers and those who have smoked fewer than 100 cigarettes in their lifetime, collectively referred to as ‘never smokers’.3
Sadly, a lot of our patients who are non-smokers tend to present far later in the disease process when it is more advanced and cannot be cured. They don’t fit the typical profile of a lung cancer patient – many are younger females4 – and neither they nor their GP or practice nurse suspect lung cancer as a possibility.
It is comparatively rare to see cases of non-smoking lung cancer in primary care, but it is more prevalent than most people might think. In the UK it is the eighth most common cause of cancer-related deaths.5 So, it is important to put assumptions aside.
Causes, symptoms and diagnosis
Non-smoking lung cancer is an area of growing research and there is much to learn. So far, other causes that have been identified include exposure to workplace carcinogens, air pollution, and radiation.6
Around 80-85% of all lung cancers are non-small cell lung cancer (NSCLC)7, and most cases of lung cancer in non-smokers and never-smokers are NSCLC.
There are many sub-types of NSCLC, but the three main ones are adenocarcinoma, squamous cell carcinoma and large cell carcinoma. Adenocarcinoma is the most common type of lung cancer in people who have never smoked.8
In this patient cohort, a non-hereditary genetic mutation or abnormality is likely to be at play. Two cancer-causing mutations are found in the anaplastic lymphoma kinase (ALK) and epidermal growth factor receptor (EGFR) genes.
The ALK gene provides instructions for making proteins in the body, but when this gene fuses with another gene the cells mutate and divide, growing rapidly in number. Similarly, a mutation in the gene responsible for the EGFR protein triggers cell proliferation – in both cases the massive growth in cells forming tumours. These are known as ALK-positive and EGFR-positive lung cancers respectively.
Signs and symptoms are broadly the same, whether or not the patient has smoked. They include: cough; fatigue; shortness of breath; weight and appetite loss; chest pain; hoarseness; recurrent chest infection; blood in sputum; persistent enlarged lymph nodes.9
NICE guidance outlines that patients over 40 with two or more symptoms should be referred for chest X-ray. Only one symptom needs to be present in smokers. Many of our younger patients who haven’t smoked come through another route, often having been referred for a CT scan for something else. It is not uncommon for them to experience back, neck or shoulder pain and visit a physiotherapist first.10
Pre-diagnosis, patients may come into general practice many times complaining of ongoing symptoms like those mentioned. The individual continues to push, because they are feeling less and less well and know in themselves that something isn’t right.
Primary care working with secondary care
Treatment for oncogene-driven lung cancer often begins with targeted therapy, which tends to offer benefits over chemotherapy. Comparatively, it may shrink tumours more effectively, cause fewer side effects, increase life expectancy, and improve patients’ quality of life.11 Targeted therapy is given for as long as it is beneficial and the patient can tolerate it. Another advantage is that it comes as a tablet, usually taken once a day at home.
Some patients live relatively well on targeted therapy for several years before further spread, when alternative treatment like immunotherapy, chemotherapy or radiotherapy or a combination of therapies may be considered. Individuals are managed by specialist teams, but primary care will maintain a key role in patient care.
Practice nurses will continue to see patients in clinics, if they have comorbidities and to provide services like cervical screening, vaccinations, and travel health advice. Those interactions provide opportunities to assess how the patient is doing on an ongoing basis. For example, patients might mention new or unusual signs and symptoms that may indicate progression of their cancer or could be caused by their cancer treatment.
Targeted therapies and immunotherapy can lead to toxicity, which can develop up to a year after a patient has finished that particular treatment.12
Side effects of therapies can very often be treated, so monitoring patients in the longer term is crucial. Prompt recognition of these signals and timely communication with secondary care means that patients could potentially continue with their cancer treatment for longer.
Supporting patients to live well with non-smoking lung cancer
Practice nurses can help support patients with non-smoking lung cancer to live well while they are undergoing treatment.
Health promotion is one area where primary care can be pivotal. People with gene mutation-driven cancer are quite often younger – in their 40s, 30s and even their 20s – and fitter and healthier in general. They may be able to continue with their lifestyle more or less as normal for some time, for example, remaining active, staying in employment, and going on holiday.
Many of our patients are invested in making positive lifestyle changes, so practice nurses can share advice and tips about diet, nutrition, and exercise where appropriate.
But perhaps the most important role for general practice nurses is to identify when patients are struggling psychologically.13 The impact of incurable cancer on an individual’s mental health is significant, and with lung cancer there is an added stigma that the patient is to blame. Fear of the taboo stops some people from opening up about their feelings and emotions, so practice teams should be alert to signs that patients are finding it hard to cope.
There are many services out there where patients can turn for help. The patient-led charities ALK Positive UK and EGFR Positive UK provide information and advocacy and run support groups. The Ruth Strauss Foundation is working to drive more research into non-smoking lung cancers, and also supports families where a parent has any incurable cancer.
Together, these organisations are raising awareness and tackling the biggest misconception of lung cancer – that you can only get the disease if you’re a smoker. This Lung Cancer Awareness Month their message is that anyone can get lung cancer.
If a patient has chronic symptoms for a period of time, don’t dismiss lung cancer as a differential diagnosis because their age and smoking status excludes them on paper. Wider recognition of this could lead to earlier diagnosis and even save lives.
References
3. https://pubmed.ncbi.nlm.nih.gov/22464348/
4. https://pmc.ncbi.nlm.nih.gov/articles/PMC7431055/
5. Bhopal, A., Peake, M.D., Gilligan, D. and Cosford, P. Lung cancer in never-smokers: a hidden disease. Journal of the Royal Society of Medicine, 2019 Vol 112(7) 269-271
6. https://journals.sagepub.com/doi/10.1177/0141076819843654
7. https://www.cancerresearchuk.org/about-cancer/lung-cancer/stages-types-grades/types
8. https://www.hopkinsmedicine.org/health/conditions-and-diseases/lung-cancer/lung-cancer-types
10. EGFR Positive UK Understanding Patient Experiences 2024
11. https://www.alkpositive.org.uk/_files/ugd/3410dd_5ff375f882d54d9d8bfdc01717a0c4da.pdf
12. https://www.nature.com/articles/s41392-019-0099-9
13. https://www.sciencedirect.com/science/article/abs/pii/S0169500224002423
