“The more there is about the individual that deviates in an undesirable direction from what might have
been expected to be true of him, the more he is obliged to volunteer information about himself, even
though the cost to him of candor may have increased proportionally.”
Joyce was a vibrant, fiery 38-year-old registered nurse who, during repositioning her intensive care patient, felt she “pulled” her back. After a month of regular chiropractic adjustments, her back pain did not improve. About that same time, she began to experience loss of appetite and nausea. Deciding it was time to further explore her back pain and investigate her gastrointestinal symptoms, she contacted her primary care provider. After a physical exam, he sent her for diagnostic imaging and lab work. By the time we met, Joyce had been diagnosed with stage IV non–small-cell lung cancer, the histology consistent with adenocarcinoma. Throughout the first few minutes with her primary medical oncologist, she was animated and talkative. She quickly put the provider at ease with her personable and optimistic “warrior” spirit, as Joyce called it. Joyce is quick to share her personal story, indicating she is married and has a 12-year-old daughter and 3-year-old son, “who I want to at least see get to kindergarten.” She has a strong support system of family and friends. Denying the typical barriers to care, like transportation, insurance, and employment, to mention a few, we shifted the conversation to the issue at hand, her cancer diagnosis.
Not missing a beat, the medical oncologist proceeded with her physical exam. Then the inevitable happened…the dreaded history inquiry. “So, how much are you currently smoking?” A deafening silence came over the room. Finally, Joyce spoke: “I don’t smoke, never even tried it.” Fast forward 1 week. Joyce returns to the clinic with her husband to discuss the remainder of her staging workup and finalize her treatment plan. There was something different. She was quiet and solemn. After her appointment, I sat with her and her husband to ensure she understood the treatment plan. We discussed side effects to treatment, the ins and outs of obtaining and storing her targeted therapy and the importance of adherence. We reviewed what supports were needed to get into place to make treatment startup go as smoothly as possible. Joyce answered questions methodically and with a bite to her tone. I paused and asked what was weighing on her mind, fully expecting her to say she feared not having an opportunity to watch her children grow up, get married, all those things that most young mothers have shared. However, Joyce caught me off guard. “You get lung cancer, and all of a sudden you know who your true friends are.” On further inquiry into the meaning of her statement, she tearfully shared that friends, coworkers, and even distant family members questioned her smoking history. “They have known me all of my life, and after I tell them what I have been diagnosed with, the only thing they can say in response is, ‘I didn’t know you were a smoker.’ Like this is my fault! So much for them helping me get through this.”
Joyce’s story resonates with familiarity. Although smoking remains one of the prominent risk factors, identifying lung cancer as a ‘smoker’s disease’ is passé. Lung cancer can no longer be treated one-dimensionally. In an era of precision medicine, lung cancer represents a heterogeneous group of malignancies that must take into account environmental and occupational exposures, lifestyle, and genomic mutability of each person.1-3 Never smokers, defined as smoking less than 100 cigarettes in a lifetime, make up 20% of those afflicted with lung cancer.3 Never smokers, like Joyce, feel obligated to defend their “I never smoked” explanation in an effort to avoid the stigma that accompanies the diagnosis. Nonetheless, because of tobacco denormalization, all lung cancer patients face the same unremitting stigma.
Stigma is defined as a distinct personal experience depicted by exclusion, rejection, blame, and devastation stemming from an expectation of critical opinion.4-6 In essence, stigma, one of the most challenging aspects of living with lung cancer, is a characteristic that makes a person different from other cancer patients, lowering them to a tainted status. Stigma, as conceptualized by Goffman, is an expression of disparity between imagined assumptions that are not established in fact versus features that can be proven. Lung cancer stigma is based on the belief that the patient’s behavior—tobacco use—was causal of cancer regardless of smoking history.6-8 Stigma associated with lung cancer is a complex national health issue, requiring it to be addressed on an individual level, within the healthcare system, and through advocacy organizations.8
Lung Cancer Stigma
Health-related stigma occurs in the context of a person’s perception of societal attitudes toward the diagnosis and its related risk factors as well as an individual’s understanding of the disease.5 The impact of lung cancer stigma depends on the degree of vulnerability the never smoker’s personal identity experiences by the stigmatization status. Regardless of smoking status, those diagnosed with lung cancer do not differ in the psychosocial aspects of stigma.9
Self-stigmatization arises when the never smoker is cognizant of the public’s perception that the diagnosis was self-inflicted and avoidable. Societal assumption that lung cancer is avoidable can alienate never smokers and reinforce internalized blame.2-4,10 Internalization of blame may influence the way never smokers interact with family, friends, colleagues, and their healthcare team following a diagnosis of lung cancer.11
Public stigmatization has been an unintentional outcome of public health programming that is focused on tobacco cessation in an effort to reduce the incidence of lung cancer. Through mass media campaigns, negative social views and stereotypes have promoted a “blame the victim” approach. This blame game has negatively affected quality of life and increased social isolation and emotional distress in never smokers.2,3
Impact of Stigma
Lung cancer stigma affects the well-being of the never smoker by eliciting negative consequences physically, emotionally, and psychosocially.4,11 Stigma is associated with treatment delay, but in the never smoker there is often diagnostic delay. Symptoms are general in nature and presumed to be secondary to another underlying illness or injury. It is only during workup to investigate an alternate diagnosis that the lung cancer is picked up. Such delay in diagnosis increases the number of sleepless nights, causing emotional distress. The stigma experienced by never smokers can lead to social isolation because of the hesitancy in sharing their lung cancer diagnosis with their support system, which in turn compounds emotional distress and can result in depression and increased anxiety.1,4-7,10 According to Hamann et al,12 advancement in the quality of care of never smokers as well as enhancement in their quality of life will require a multidisciplinary team approach to demonstrate a reduction in lung cancer stigma burden.13
Lessening Lung Cancer Stigma
Alleviating lung cancer stigma involves education, empowerment, and engagement. Lung cancer stigma in never smokers comes from lack of knowledge about lung cancer as a whole. First, never smokers must be educated fully on their diagnosis. Navigators need to develop an environment in which patients and their families feel safe to voice worries and concerns without fear of stigmatization. Patients need to be armed with communication skills that will allow them to tell their story to all who will listen. Their story must explicitly tell of their lived experience and that of their family. The more stories the public hears, the sooner we can break through the blaming mindset to one of compassion and understanding. Next, navigators must negotiate supporting and relegating antismoking campaigns to raise public awareness on nontobacco-related risk factors for lung cancer. By educating the public on varying risk factors, we can begin to see lung cancer patients the same way we see all other patients living with cancer.8,13
Never smokers need to feel empowered to focus on self-care, whether it is the ability to speak honestly with their healthcare team or participating in cognitive therapy to mitigate feelings of anxiety and depression.2,4,13 Navigators may need to encourage never smokers to utilize support groups and peer-to-peer counseling, whether in person or online, to connect with others experiencing stigmatization.9
Funding support for lung cancer research fails to keep pace with other cancers, believed in part to be due to the role the media has played in embellishing lung cancer stigma. This sensationalism has an important role in determining and reinforcing public attitudes as well as research funding source skepticism. Navigators need to take on a superlative advocacy role to abate the “blame to victim” viewpoint, and work with local and federal government officials to garner funding for lung cancer research.13
Navigators proactively need to model the conversation to address lung cancer stigma to lessen the burden of physical, emotional, and psychosocial distress for never smokers. By presenting a unified front with never smokers, former smokers, and current smokers, interventions can be developed to help eradicate the stigma of lung cancer. Does it matter if patients made a lifestyle choice to smoke or not smoke? After all, cancer is what cancer is. No other cancer is stigmatized to the extent lung cancer is. We do not shame or blame a patient for eating low-fiber high-fat diets, being sedentary, or worshipping sunrays excessively. We have a duty to our patients to mitigate lung cancer stigma to advance the science. The question, “Do you smoke?” needs to be changed to a meaningful conversation starter assessing all risk factors: “Tell me, have you been exposed to….” By successfully addressing and working to alleviate lung cancer stigma, people like Joyce would be able to receive quality cancer care without the added burden of self-inflicted distress.
- Kornhauser C, Quinlan S, Hu N, et al. Lung cancers and stigma: perception or reality. The Oncology Nurse. 2015;6(1):1.
- Lehto RH. Patient views on smoking, lung cancer, and stigma: a focus group perspective. Eur J Oncol Nurs. 2014;18:316-322.
- Yang P. Lung cancer in never smokers. Sem Respir Crit Care Med. 2011;32:10-21.
- Lui H, Yang Q, Narsavage GL, et al. Coping with stigma: the experiences of Chinese patients living with lung cancer. SpringerPlus. 2016;5:1790. https://doi.org/10.1186/s40064-016-3486-5.
- Cataldo JK, Jahan TM, Pongquan VL. Lung cancer stigma, depression, and quality of life among ever and never smokers. Eur J Oncol Nurs. 2012;16:264-269.
- Cataldo JK, Slaughter R, Jahan TM, et al. Measuring stigma in people with lung cancer: psychometric testing of the Cataldo Lung Cancer Stigma Scale. Oncol Nurs Forum. 2011;38:E46-E54.
- Occhipinti S, Dunn J, O’Connell DL, et al. Lung cancer stigma across the social network: patient and caregiver perspectives. J Thorac Oncol. 2018;13:1443-1453.
- Carter-Harris L. Lung cancer stigma as a barrier to medical help-seeking behavior: practice implications. J Am Assoc Nurse Pract. 2015;27:240-245.
- Knapp S, Marziliano A, Moyer A. Identity threat and stigma in cancer patients. Health Psychology Open. 2014;1(1):1-10.
- Chambers SK, Morris BA, Clutton S, et al. Psychological wellness and health-related stigma: a pilot study of an acceptance-focused cognitive behavioural intervention for people with lung cancer. Eur J Cancer Care. 2015;24:60-70.
- Johnson LA, Schreier AM, Swanson M, et al. Stigma and quality of life in patients with advanced lung cancer. Oncol Nurs Forum. 2019;46:318-328.
- Hamann HA, Ver Hoeve ES, Carter-Harris L, et al. Multilevel opportunities to address the lung cancer stigma across the cancer control continuum. J Thorac Oncol. 2018;13:1062-1075.
- Marlow LAV, Waller J, Wardle J. Does lung cancer attract greater stigma than other cancer types. Lung Cancer. 2015;88:104-107.