Lung Cancer Stigma: A Growing Problem for Patients and Oncologists Alike

While the treatment landscape for lung cancer has seen exciting improvements over the past decade, the stigma around the disease is higher than ever before, according to Jennifer King.

In an interview with CURE at the 2019 American Society of Clinical Oncology (ASCO) Annual Meeting, King — who is senior director of science and research at the GO2 Foundation for Lung Cancer and lead author on a study that took a 10-year look at patient and oncologist attitudes about lung cancer — discussed what she and her colleagues discovered, and what patients can do to help address the stigma associated with their disease.

CURE: Can you begin by discussing the lung cancer stigma and its impact on the care and treatment of patients and survivors?

King: It’s been known for a while that stigma is something that can affect patients with lung cancer. There’s been prior research that shows that it can be detrimental from a psychological standpoint, as well as lead to worse health outcomes. Patients who feel stigmatized often won’t speak about their lung cancer to friends or loved ones, they can suffer more depression and more psychosocial issues, and it can even impact their level of care.

Could you tell us about the survey that was conducted and presented here at ASCO?

In 2008, we conducted a survey of patients, of the general public and of oncologists to understand their attitudes about cancer in general and lung cancer specifically. What we found then was that lung cancer patients did feel a pretty significant amount of stigma in a number of different types of settings. But we wanted to come back a decade later and see if that has changed.

So, we used a survey to ask a number of different questions about people’s awareness of different types of cancers, what types of cancers they were interested in donating to or would support advocacy for. We asked about treatment and medical care for patients, and about how oncologists felt medical care was for different types of cancers and which types had the best treatment options available. These were asked in 2008 and again in 2018, so we could compare how the standard of care has potentially changed over that decade, both from the patient perspective and from the oncologist perspective.

We also asked a number of questions about experience: As a patient, have you experienced these things? Do you feel these things? As an oncologist or a member of the general public, do you think that there is stigma associated with the disease? How do you treat people with this disease? And we were able to get into a number of different things about both the care experience and how people are treated by society in general.

And were any of the results you found particularly surprising?

Unfortunately, we saw an improvement in care, but we found even more stigma. We asked both patients and oncologists if they agreed with the statement that there is a stigma surrounding lung cancer, and 70% of patients and 68% of oncologists agreed or strongly agreed that there is a stigma.

We also asked the oncologists if they felt that patients with different types of cancer were handled or approached differently, and shockingly, more than half said yes. And when asked which types of cancer were handled differently, lung cancer was the highest rated. Even the oncologists are reporting that physicians and nurses are handling different cancer patients differently.

The patients said the same thing. One-third said they felt that they were viewed or treated differently because they were a patient with lung cancer instead of a patient with a different type of cancer. So clearly even in the context of their medical care, both sides are saying that there are differences in how the patients are being handled.

What can patients do to address this stigma?

We’ve seen a lot of empowered patients who are going out and talking about it, which I think is fantastic. It’s raising the awareness for everyone else about how they have been treated, but it can be a double-edged sword. We see patients who go out and very strongly make the point that they had “never smoking” lung cancer, which, while that educates that anyone can get lung cancer, which is completely true, it also makes a distinction between the two populations.

So it’s a difficult problem, but I do think patients can really help by raising the awareness that yes, anyone can get lung cancer, but we also need to be sympathetic and empathetic to everyone who has cancer, no matter what type or what their risk factors may have been.