Lung cancer stigma – what are the harms for survivors?

“Did you smoke?”

This is probably the most common question that lung cancer patients and survivors are faced with after their diagnosis. And it’s an issue: the stigma attached to a lung cancer diagnosis results in physical, psychological and societal harm that doesn’t get addressed frequently enough. Today, I’m speaking at the Australian Lung Cancer Conference in Sydney about why that is, and what we can do about it.

What is lung cancer stigma?

Stigma is the judgment or negative opinions that people are met with when they go through certain confronting situations, or when they belong to a particular group that has negative stereotypes associated with it.

For example, when someone is diagnosed with (or has survived) lung cancer, they are sometimes judged because of the strong link between smoking and lung cancer. If they are smokers, they will often be blamed for their illness, and if they are non-smokers, they’ll at the very least be presented with the question of whether they’ve ever smoked (which also implies blame).

Why is it so harmful?

Many factors impact on a lung cancer patient’s survival: their cancer’s stage, the type of lung cancer, their smoking history, their sex, age at diagnosis, treatment types, insurance they have, their socio-economic status, to name but a few. While we don’t have enough research dedicated to stigma, evidence has shown that there is significant harm associated with it.

Let’s start with the potential physical harm: because of lung cancer stigma, patients may be less likely to follow through with long-term follow-up and doctor check-ins, which can result in worse outcomes. Given that lung cancer survivors are at increased risk of a second cancer – not as a metastasis of their original cancer, but a separate, new diagnosis – this is an important issue to consider.

A cancer diagnosis is isolating – but it can be especially tough if there is stigma involved. A systematic review that looked at 15 studies on the topic found that lung cancer stigma results in poorer quality of life and higher levels of distress. Another recent Australian study also found a significant association between stigma, distress and quality of life, with half of all lung cancer patients experiencing high levels of anxiety and depression. And yet another piece of research found that lung cancer patients are at an eight-fold risk of suicide.

Stigma can also be a barrier to medical help seeking, meaning that it can keep patients from receiving the medical help they need because of clinicians’ beliefs and attitudes. For example, there are significant gaps and delays in appropriate referrals, and palliative treatment is under-used.

And lastly, there are also wider-reaching, societal harms: stigma may have contributed to lesser funding going towards research into lung cancer and programmatic assistance for lung cancer survivors. This is a problem, as survival rates have hardly improved since the 1980s.

What can we do about it?

While the link between smoking and lung cancer is strong – and we still need to encourage and support people to quit – public discourse about lung cancer should include stigma more frequently, and acknowledge its negative effects. The other risk factors playing into lung cancer – e.g. exposure to matters like asbestos and family history – shouldn’t be ignored either.

Another thing that the research community needs to work on together is developing and testing potential new interventions to reduce stigma. We know of one intervention that addresses some of it by introducing non-judgmental elements into the treatment pathway, but more can be done in this space.

In sum, we need more research into lung cancer, supportive interventions for people affected by lung cancer, and a nuanced discussion.

At Cancer Council NSW, we also offer a variety of supportive care services for anyone affected by cancer: for example, you can call 13 11 20 Cancer Information & Support to speak to a qualified health professional about anything to do with cancer, and we can help with a variety of services like transport to treatment, accommodation, legal and financial assistance and many more. Our website has an overview of our services.

Nicole Rankin is a Senior Research Fellow at Cancer Council NSW, and is speaking about lung cancer stigma at the Australian Lung Cancer Conference today.