Navigating the Stigma of Lung Cancer: A Psychologist's Perspective

Cecili Weber, Development & Foundation Content Manager

Dr. Jamie Ostroff, clinical health psychologist and psychological liaison to the Thoracic Disease Management Team at Memorial Sloan-Kettering Cancer Center, weighed in with her perspective on smoking stigma and its effect on the lung cancer community. Dr. Ostroff founded Memorial Sloan-Kettering’s Tobacco Treatment Program, where she continues to serve as director and works with people diagnosed with cancer seeking treatment for tobacco dependency.

Have your patients encountered the stigma of lung cancer, and if so, what have they shared about it with you?

Countless patients have shared that they often receive critical and judgmental comments when they share their diagnoses with others. Family, friends, and coworkers may respond by saying, “I didn’t know you smoked!” or “Do you smoke?”  Even medical care providers may inadvertently discuss smoking in a way that lands poorly with patients. I am a card-carrying tobacco treatment specialist working in tertiary (highly specialized) cancer care, so for me, I often see patients with a history of tobacco use as well as patients who do not. We need to provide compassionate and even sensitive care to patients with lung cancer who have never smoked, are former smokers, or are people who currently smoke. No one deserves lung cancer and every patient diagnosed with lung cancer needs access to our best treatments - be they clinical trials, surgical interventions, or even behavioral interventions for tobacco dependence.

Often when lung cancer stigma shows up, it is wearing a costume of smoking stigma. The public does not understand that although smoking remains the leading preventable risk factor for lung cancer, not all patients diagnosed with lung cancer have a history of either active or passive tobacco use. The assumption is that lung cancer = smoking, but we now know that at least 20% of patients diagnosed with lung cancer have no known smoking-related risk factor. What is interesting is that regardless of your smoking history, lung cancer stigma is a universal phenomenon for patients. This means we need to think of ways to discuss smoking with patients that promote goals of reducing smoking morbidity and mortality but not at the expense of creating shame or stigmatizing patients who do have a smoking history.

It is important for people to understand that smoking is not a habit. Unfortunately, nicotine is a highly addictive chemical substance that highjacks the neurobiology of the brain and causes a portion of people who experiment with smoking to lose their will or ability to stop smoking on their own. That is when it becomes an addiction. Nicotine addiction has a unique tenacity. If it were easy, then people would quit. My message for everyone is to be empathic and recognize how serious nicotine addiction is.

What has contributed to the stigma?

In 1964 the Surgeon General published a report stating that smoking was the leading cause of preventable death and disease in lung cancer, 12 additional cancers, and many other health conditions. The success of that reporting is that population rates of smoking have come down, but the consequence is that we have changed the norms around smoking, and people who smoke are often shamed in our culture. Young children, as young as 4 or 5, can tell you that smoking is “bad”. But what I can tell you is that smoking may be bad, and big tobacco companies are certainly bad, but people who are dependent on tobacco and addicted to nicotine are not bad. Again, no one deserves disease.

Lung cancer, is lung cancer, is lung cancer. As one unified community, we want to call for attention, awareness, knowledge, resources, and the best scientific minds to address lung cancer. Where I see us falling short in addressing lung cancer stigma is focusing on treating former or current smokers and nonsmokers as two separate groups. As if nonsmokers are less deserving of lung cancer. Unity and empathy for ALL within the lung cancer community is the path forward. My greatest hope is that when a patient has to say to a family member or a friend, “hey listen, there is something that I need to tell you. I have been diagnosed with lung cancer.” That family member’s response will be, “I am so sorry, how can I help you?” rather than a judgment about smoking. That is the flip that we are working towards. There are lots of diseases and even cancers that have controllable risk factors, but somehow only patients with lung cancer seem to face this level of judgment and assumption.

Do you have suggestions for ways patients and their families can take care of themselves emotionally while navigating life with lung cancer?

Cancer diagnosis and treatment is an extraordinarily stressful event. Recognizing the importance of self-care when going through cancer treatment is critical. There are multiple ways that people process the emotions – many stay busy and try not to think about it, some people will find joining a support group or talking with other patients helpful, while others need to do a lot of research to gain a sense of control and feel confident in their healthcare decisions. There are many avenues for processing the emotions brought forth by cancer diagnosis or stigma, but I would say that patients and caregivers should prioritize emotional well-being in the same way that they prioritize physical well-being. Both are essential to survivorship. Lots of hospitals or cancer care networks have psycho-social support. National cancer advocacy groups, like LUNGevity and others, are good at connecting patients with volunteers or navigators that can provide people with the resources needed to better cope with lung cancer.

Is there any advice that you give to lung cancer patients on how to respond to questions about smoking? Do you offer a different suggestion to patients with a history of smoking?

If you have a relationship with the person asking you the questions and you choose to entertain this dialogue, because you do not have to, I suggest being truthful and letting them know how their line of questioning makes you feel. Kindly but firmly letting people know that either their questions or assumptions are harmful to you is a good place to start. You could start by saying something like, “I have heard that question before and it is not helpful. What I really need from you is support.”

Usually, when people make those comments, they are being thoughtless, not malevolent.

People say the first thing that comes to their mind, and my hope is that people will pause for a moment and consider how they want to respond in a moment as serious and important as a cancer disclosure. What I do not think people realize is that frankly, whether it is a genetic mutation, an exposure to a carcinogen at work, active or passive smoking, older age, or unknown causation – what all patients need is support and compassion.

Profound societal changes have happened for breast cancer, largely because of the engagement of the breast cancer community. If there is one thing that I would encourage the lung cancer community to do is to be visible. Tell your story. The more active and engaged members of the lung cancer community we have, be they patients, survivors, or caregivers, the more likely we are to move the needle and see patients with lung cancer treated like people living with other diseases or forms of cancer.

My hope is that soon we will welcome and be inclusive of a lung cancer community made up of people who never smoked as well as those who either previously or currently smoke. We are all dedicated to bringing the best discovery and innovation to the lung cancer space, and to saving the lives of all who are affected by lung cancer.

Jamie S. Ostroff, PhD, is a clinical health psychologist with expertise in helping patients and their families cope with the psychosocial challenges of cancer diagnosis, treatment, and survivorship. She serves as a psychological liaison to the Thoracic Disease Management Team at Memorial Sloan-Kettering Cancer Center. She established and serves as Director of Memorial Sloan-Kettering’s Tobacco Treatment Program providing evidence-based treatment for tobacco-dependent cancer patients. She maintains an active program of research focusing on the psychological and behavioral aspects of lung cancer prevention, early detection, treatment, and survivorship. Much of her work focuses on the development, testing, and dissemination of innovative interventions to promote smoking cessation in cancer care. Additionally, Dr. Ostroff serves on several national committees dedicated to addressing the needs of patients and caregivers with lung and other tobacco-related cancers, including the National Lung Cancer Roundtable, the Go2 Foundation for Lung Cancer, and the Cancer Centers Cessation Initiative.

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