Image: Dr Astero Klampatsa
Every day in the UK, about 1,000 people find out that they have cancer. Most of these people will end up sharing the news with family, friends and colleagues, from whom they will usually receive plenty of support, well wishes and empathy. However, for about 130 of these people – those who have been told they have lung cancer – the scenario may be very different.
Rather than being asked how they are coping with their diagnosis, many people with lung cancer will immediately be asked whether they smoke or used to smoke. In place of kindness, some of these individuals might only find judgement and blame, potentially leading them to feel less deserving of support and treatment.
Research has shown that some healthcare professionals and members of the public believe smoking reduces a person’s right to expensive cancer treatments. They do not seem to consider that smoking is far from being the only modifiable risk factor in cancer, nor that many uncontrollable aspects of a person’s life can influence their likelihood of developing a nicotine addiction. This attitude impacts everyone with lung cancer, even though about 15 per cent of these people will never have smoked.
People with lung cancer deserve to be treated with the same care and respect as people with other forms of cancer. At The Institute of Cancer Research, London, we are dedicated to meeting the challenges of lung cancer and other cancers of unmet need, and we won’t stop until we can find new treatment options for people with these conditions.
Smoking became popular before the dangers were fully apparent
Nowadays, it’s common knowledge that smoking can cause lung cancer. However, when the habit first started to become ingrained in social gatherings, daily routines and popular culture, most people were unaware of this link.
The 1920s, sometimes referred to as the ‘Roaring Twenties’, was a somewhat tumultuous time in the UK. People who had survived World War I and the Spanish flu pandemic found themselves living through a radically transformative decade, where mass entertainment and a consumer-driven economy led to significant social changes.
Despite ongoing political conflict and high unemployment, this was an exciting time for many. Women could vote and take on professional roles previously only available to men; affluent households owned a phone, radio and car for the first time; and some people could even fly abroad for holidays. Advances in technology led to the production of televisions, as well as fridges, hairdryers, vacuum cleaners and other useful products that increased the time available for leisure activities.
Tobacco companies capitalised on the population’s new appetite for mass entertainment and the flourishing nightlife in UK cities, designing their cigarette marketing campaigns to target young women, who might now go out in the evening to dance, drink and smoke. Many of the men who returned from the First World War had already developed a smoking habit, and by 1920, cigarettes accounted for half of the total tobacco production in the UK.
Against this backdrop, scientists were busy making important breakthroughs across a wide range of fields. In Chelsea, London, researchers at The Institute of Cancer Research (ICR) – then called The Cancer Hospital Research Institute – identified many of the cancer-causing chemicals in cigarette smoke. However, this discovery was unable to dent smoking’s popularity at the time.
In fact, the link between smoking and lung cancer was not widely acknowledged until cohort studies in the 1950s provided indisputable evidence. One of the scientists responsible for this work, Professor Sir Richard Doll, even went on to become Chairman of the ICR.
Despite these research findings, in 1974, 46 per cent of people aged 16 and over in the UK were still smoking cigarettes. Although this number has decreased over the past few decades, an estimated one in eight adults continue to smoke. Many of these people would like to quit but find it very difficult because they have become dependent on the nicotine.
Image: Smoking was glamorised for years. Credit: Pexels from Pixabay.
Smoking is not the only habit or behaviour linked to cancer
According to the World Health Organization (WHO), up to half of all cancer cases are preventable. Some risk factors, such as environmental pollution, occupational carcinogens and cancer-causing infections, may not be within a person’s control. However, many people can take steps to avoid or minimise other risk factors, which include not only tobacco use but also dietary choices, physical inactivity, alcohol consumption and exposure to UV light.
Despite this, a blame-the-victim mentality seems to be reserved primarily for people with lung cancer. The American Lung Association notes that “when many lung cancer patients divulge their diagnosis, they are asked, ‘Did you smoke?’ This knee-jerk response is the result of a stigma that has followed lung cancer for decades.”
In a survey completed by more than 1,000 people, lung cancer scored more highly overall on the Cancer Stigma Scale than breast, cervical, colorectal and skin cancer. The participants said they would be more likely to feel awkward around and avoid someone with lung cancer. They also attributed a high level of personal responsibility to people with lung cancer, second only to skin cancer.
This supported the findings of an earlier survey, in which 1,620 women were asked to rate the extent to which they would blame someone with a diagnosis of various diseases, including lung cancer. While between 9 per cent (for leukaemia) and 37 per cent (for cervical cancer) of respondents attributed some blame to people with other cancer types, 70 per cent considered people with lung cancer to be at least partly to blame for the disease.
Nevertheless, we know there are other lifestyle factors associated with cancer that are common across the population – data show that one in four adults in England are living with obesity and that an estimated one in 16 people in the UK have diabetes, with type 2 diabetes – which is largely preventable – accounting for 90 per cent of cases. Obesity and diabetes are both associated with an increased risk of several cancers.
In addition, more than one in four adults in the UK use sunbeds, increasing their risk of skin cancer, and almost one in four adults in England and Scotland regularly exceed the safe drinking guidelines for alcohol, despite its links with multiple types of cancer.
It does not seem logical that while people with most cancer types do, quite rightly, receive sympathy and support following their diagnosis, stigma pervades society’s attitude towards lung cancer.
Dr Astero Klampatsa, Leader of the Thoracic Oncology Immunotherapy Group at the ICR, believes there are multiple reasons for this distinction. She said:
“Firstly, lung cancer has a very direct and well-established causal link to smoking because it accounts for the majority of cases. Other cancer risk factors, such as obesity and drinking alcohol, have more complex and indirect causal pathways.
“Secondly, there is a perception that lung cancer is a self-inflicted disease caused by the personal choice to smoke cigarettes. This view places more blame and responsibility on lung cancer patients compared with other cancers where the risk factors are seen as more uncontrollable.
“It doesn’t help that smoking is still often viewed as a bad habit rather than a powerful addiction. This underestimation and lack of understanding of the addictive nature of smoking also contributes to the blame directed towards lung cancer patients.”
Stigma directly affects patient outcomes
The strong feeling of disapproval that many people have regarding smoking means individuals who receive a diagnosis of lung cancer can often be unjustly blamed for the disease developing. Even if a person does not experience this directly, they may worry that society is judging them – a fear called perceived stigma. In some cases, they may internalise how they believe the public sees them and start feeling negative about themselves. This is known as self-stigma, and it can significantly lower a person’s self-esteem and self-worth.
People who smoke may, on noticing new respiratory or systemic symptoms, be unwilling to present to a GP because they feel shame and worry that they will be judged by others. This could lead to a delayed diagnosis, which would reduce the likelihood of a positive outcome. Older research also suggests that some physicians might be less likely to refer people with certain stages of lung cancer for further treatment than to refer people with the equivalent stages of breast cancer.
The stigma around the disease may be partly to blame for it receiving less funding than other cancer types, which hampers the development of more effective treatments. An analysis of UK funding data found that although lung cancer accounted for about 26 per cent of cancer deaths in 2010, it received only 6 per cent of cancer research funding. A more recent study investigating global cancer research funding in 2020 reported that lung cancer was the least well-funded cancer type when taking into account the burden of disease.
This situation is challenging because better treatments are urgently needed. Even among those whose lung cancer is detected at the earliest stage, more than one third may not survive for five years after their diagnosis.
Dr Klampatsa said:
“Lung cancer tends to receive less funding support relative to its disease burden. Although it is the leading cause of cancer deaths worldwide, it remains critically underfunded in research compared with other cancers.
“Without adequate funding, maintaining a research team and making progress in research projects is impossible. The negative perception of the disease also creates barriers for lung cancer researchers in garnering public support, advocacy and fundraising efforts.”
Stigma also affects patient outcomes indirectly
On top of worrying about their health, the lack of support that people with lung cancer often face can result in anxiety and depression, a combination known as psychological morbidity. Research has shown that people with lung cancer are more likely than people with other cancers to exhibit significant mental health symptoms, with as many as 55 per cent meeting the criteria for clinical depression. Increased psychological morbidity is associated with a high symptom burden, a reduced quality of life and a raised risk of mortality.
In addition, people who are wary of seeking support because they do not know how they will be received – particularly those with self-stigma who blame themselves – can become isolated. In this respect, the stigma around the disease prevents people with lung cancer from feeling empowered and uniting to advocate for better awareness and increased funding.
Lung cancer can affect people who have never smoked
Although awareness of the link between smoking and lung cancer is high, many people incorrectly believe that this habit is the sole cause of the disease.
In fact, while smoking is the leading cause of lung cancer, there are other possible causes, including exposure to asbestos, secondhand smoke, radon gas or various other chemicals. In some cases, there is no clear cause, meaning a person with no risk factors for lung cancer can still develop the condition.
Overall, about 14 per cent of people with lung cancer in the UK have never smoked. Cancer Research UK points out that if this subset of cases were a separate disease, it would still be the eighth most common cause of cancer-related death and be responsible for more deaths than leukaemia, lymphoma and ovarian cancer.
That means a significant number of people each year are discriminated against for something they have not done. They can ‘defend’ themselves from individuals by explaining that they do not smoke, but the effects of stigma on their diagnosis and treatment might still lessen their chance of a positive outcome. In addition, by separating themselves from people who have smoked, they may unwillingly be promoting the idea that those with this habit are deserving of blame.
Image: Asbestos, common in older buildings, can increase the risk of lung cancer. Credit: Fabien from Pixabay.
Multiple factors influence a person’s decision to smoke
Another thing people tend to overlook when judging those who smoke is that the decision not to smoke is not equally easy for everyone. Statistics show that people who are unemployed or have lower-paid jobs are more likely to smoke than people in higher-paid jobs. In addition, smoking behaviour correlates with level of education, with people who describe themselves as having no qualifications being the most likely to smoke.
Younger people are also significantly more likely to start smoking if many of those around them already smoke. Research has shown that peer pressure is among the most important risk factors for smoking initiation, with about eight in 10 people who smoke reporting that they experienced this influence. Action on Smoking and Health also notes that, in England and Wales, 98 per cent of people who smoke have friends who smoke, compared with 42 per cent of people who do not smoke. Experts state that this is often due to “a desire for peer acceptance and a sense of belonging.”
Furthermore, children who live with family members who smoke are up to three times more likely to start smoking later in life than those who grow up around non-smokers.
Genetic factors also contribute, with researchers – including those at the ICR – finding that a person’s genes can affect their likelihood of becoming dependent on nicotine and influence how difficult it is for them to quit smoking.
It is the addictive properties of nicotine that make it so challenging for many people to quit. Nicotine increases the levels of a chemical messenger in the brain called dopamine, which produces positive feelings such as satisfaction, motivation and pleasure. The effects of nicotine are both fast and short-lived, which encourages the person to have another cigarette to maintain them. Over time, continued nicotine exposure changes how the brain works, leading to withdrawal symptoms if a person stops smoking.
People who have never become addicted to nicotine may underestimate how difficult it is to quit smoking. Experts believe that the drug is comparable in addictiveness to opioids, such as heroin, as well as alcohol and cocaine.
As a result, research has shown that even when people use nicotine replacement products, attend support groups or access counselling, three in every four attempts to quit smoking will fail within a year. The rate of failure for unaided quit attempts is even higher at 95 per cent.
Advances are being made in lung cancer
Fortunately, many researchers are doing what they can to improve outcomes for people with lung cancer. As a result, the past decade has seen advances made in both diagnosis and treatment.
In the early stages, lung cancer is often asymptomatic, so people may live with the disease for many years without knowing they have it. Over this time, the cancer spreads, making it more difficult to treat once it does become apparent.
A national targeted lung cancer screening programme has been introduced in the UK to help detect the disease sooner in people identified as being at high risk. This programme is expected to detect up to 9,000 lung cancers a year at an early stage, when treatment is far more likely to be effective.
Dr Klampatsa said:
“The early detection of lung cancer is crucial for saving more lives, and we are starting to see a shift towards more efficient diagnosis. Low-dose CT scans are allowing lung cancers to be caught at very early stages when they are more treatable. There is also ongoing research into the role of airway DNA detected in liquid biopsies in aiding early diagnosis.”
Scientists have also made progress in treating lung cancer. Analysing the genomes of people with the disease has helped them better understand its development and how it responds to different treatments. They have been able to start using more innovative treatment approaches to try to tackle lung cancer.
Dr Klampatsa said:
“Immunotherapy, which activates the body’s immune system to attack cancer cells, has emerged as a major new treatment approach. For example, immune checkpoint inhibitors have been shown to significantly prolong survival in a subset of patients with non-small cell lung cancer (NSCLC). Combining these drugs with chemotherapy can actually improve outcomes.
“In addition, therapies that target known mutations, including EGFR and ALK, have performed well against chemotherapy in clinical trials involving people with advanced NSCLC, improving survival rates and reducing the likelihood of disease recurrence.”
Dr Klampatsa’s expertise lie in lung cancer and in mesothelioma, which is a cancer that develops in a thin layer of tissue called the mesothelium and is caused by exposure to asbestos. The mesothelium covers many internal organs, including the lungs, abdomen and heart. Her work is focused on understanding the underlying biology of these diseases and developing more effective treatments to help increase quality of life and survival for patients.
“Mesothelioma and lung cancer are both aggressive, with a very poor prognosis,” she said. “It’s a challenge to work with such hard-to-treat diseases, but the hope of achieving improvements is very motivating.
“Another aspect that drives me is that both diseases share some important social determinants, including low socioeconomic position. People who have a low income or live in a disadvantaged area have an increased risk of developing lung cancer or mesothelioma, and they are more likely than other people to have a poor outlook. I feel very passionate about using my research to help the people affected by both of these diseases.”
Dr Klampatsa is developing and testing novel CAR-T cell therapies, which are immunotherapy treatments that involve engineering the patient’s own immune cells to recognise and kill cancer cells. She is also working on projects that relate to the immunobiology of mesothelioma and lung cancer, considering what type of immune cells are found within these tumours, how they function and how we might be able to use them as targets or tools to advance cancer therapy.
We all have a part to play
Lung cancer stigma persists because people who do not know enough about the disease base their opinions on misinformation, assumptions and biased perceptions. By taking the time to educate ourselves and others, we can start to end the discrimination against people with lung cancer, helping reduce self-stigma and shame.
Dr Klampatsa said:
“You can help challenge stigma by speaking up when people make negative comments about those with lung cancer, who are already going through a difficult time. Increasing awareness that lung cancer can affect anyone, regardless of their smoking history, is an essential first step towards improving patient advocacy and, in turn, increasing funding for life-changing scientific research.
“At the ICR, we want to defeat all types of cancer, and we are committed to working hard to improve and extend the lives of people with lung cancer.”
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If you would like to contact Dr Klampatsa about her work, you can email her at [email protected].
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