Lung Cancer – The Bias, The Stigma, The Shame, Blame and Guilt

Lung Cancer Foundation of America is proud to be a sponsor of the study discussed in this article . Please also view our own video regarding the stigma of smoking and lung cancer:

The Stigma of Smoking and Lung Cancer

By , About.com GuideJune 24, 2013

What are your first thoughts when you hear that someone has lung cancer? Take a few seconds and imagine this scenario.

What thoughts and questions came to mind?

Then think of your first thoughts when you hear someone has breast cancer?

Are those thoughts different? If so you aren’t alone. If you had any thoughts such as “lung cancer is a self inflicted disease” you’re in the majority party. A new study found that – perhaps only subconsciously – roughly three-fourths of people harbor negative attitudes towards those with lung cancer.

It breaks my heart…

The study I’m speaking of is one that was sponsored by Genentech along with Project Implicit and several lung cancer organizations including LUNGevity. In something called the Lung Cancer Project close to 1800 people were evaluated via a 10-minute online test – one designed to see if they had a subconscious bias towards people with lung cancer. The goal was to answer the question: Deep inside – in that place where you think but don’t share your thoughts – what are your first thoughts and how do you really feel when you hear that someone has lung cancer?

It wasn’t just an academic question. The purpose of the study went beyond simply assessing people’s attitudes about lung cancer. The reason the study was done at all was to find out why so many people with advanced lung cancer don’t receive proper medical care – the kind of care they would receive if they had another form of cancer.

The results?

Three fourths of those who participated had a negative bias towards people with lung cancer. When those feelings were broken down, the percentage of people who associated negative thoughts with lung cancer included:

  • Shame – 67%
  • Stigma – 74%
  • Hopelessness – 75%

When this is combined with other studies that suggest a subconscious bias leads to poorer medical care, that’s a big problem.

Why the negativity?

Prior research has suggested that the negative feelings people have about lung cancer are due to a combination of the stigma, blame and hopelessness. The stigma and blame meaning that lung cancer is often viewed as a self-inflicted disease caused by smoking. The hopelessness likely stems from the low survival rates. Overall 5-year survival rates for lung cancer are barely 16%. That’s in deep contrast to the comparable rates for breast cancer (89%) and prostate cancer (99%.)

Could it be that the public simply isn’t aware of lung cancer statistics and lung cancer myths? For example, 20% of women who develop lung cancer have never put a cigarette to their lips? Or that new therapies are coming out that are changing the course of lung cancer?

Sadly, the bias in this study wasn’t just the uneducated public. It included cancer patients, caregivers, and even healthcare professionals.

The following article talks about the stigma at all levels – the public, individuals with lung cancer, and physicians. If you have been affected by the stigma, there is also a link at the bottom where you can share your story.

Certainly negative feelings, and the likely consequence of poorer treatment, are enough. But another recent study compounds this further. This study looked at the incidence of depression in patients with lung cancer in Korea. Roughly a third of the lung cancer survivors had negative attitudes towards themselves. 10% of these people had experienced social discrimination due to the stigma of smoking and lung cancer, and a fourth experienced clinical depression. Those patients who had experienced the stigma were two and a half times more likely to experience depression.

Why is this important?

A review of the role of depression in lung cancer is sobering. Depression reduces quality of life, and may also decrease survival. One study found that people with non-small cell lung cancer who were depressed had poorer survival rates 6 months after their diagnosis. Another study of people with stage 3B and stage 4 lung cancer found that for people with lung cancer who were not depressed, median survival was twice as long as those who were clinically depressed.

What can you do if you are a loved one of someone with lung cancer, a healthcare professional, or someone who hasn’t known anyone with lung cancer, but is bound to in the future?

Take the test.

Next time you come across someone with lung cancer, please don’t ask them if they smoked.

What can you do if you’re living with lung cancer?

If you smoked, forgive yourself. You are the most important person when it comes to removing the stigma.

When you hear negative remarks, use it as an opportunity to educate the public. You might say, “Yes, lung cancer is caused by smoking, but there are other causes as well.” Or perhaps someone may need a reminder that everyone with cancer deserves excellent care and support no matter what their history.

It helps when you don’t feel alone. Find a support group that includes only people with lung cancer. If one is not available in your community, online support groups are available. LUNGevity has a Support Community that features message boards and a telephone buddy program for starters. The LUNGevity Lifeline can match you with a fellow lung cancer patient or caregiver. CancerCare has excellent resources including both support groups and counseling. Lung Cancer Alliance has Support Groups and a Phone Buddy Program. If you are interested in advocating for lung cancer, check out the National Lung Cancer Partnership. You can also read about people living with lung cancer on their site, Stories of Strength. Once a month you can join the Lung Cancer Living Room to “hang out” online with lung cancer survivors, ask questions, and learn about the latest research in lung cancer.

Ask questions and do some research. Consider getting a second opinion. There are many more options for treatment than there were just a few years ago.

Video Discussions About the Stigma of Lung Cancer

I can write about the stigma and how it affects people with lung cancer, but there is nothing like hearing the voices of people living with lung cancer who have shared how it feels, and what helps to support them as they cope with the stigma: