Some cancers carry stigma or cause people to feel guilty about their diagnosis.
No one deserves a cancer diagnosis, yet some patients feel stigmatized by their diagnosis, explained Lee Ann Johnson, PhD, RN, an assistant professor of nursing at the University of Virginia School of Nursing. Stigmas can be associated with a wide variety of cancer types including lung cancer and a possible association with smoking; human papilloma virus-related cancers such as oral, cervical, and anal cancers; male breast cancers; and male-specific cancers such as testicular, prostate, and penile cancer.
Johnson understands these stigmas well. Her mother, who never smoked, died of lung cancer. Her grandfather, a former smoker, received a lung cancer diagnosis decades after quitting.“
In my family, we never made a big deal out of the smoking either way, but I have been to medical conferences and heard patients speak who often feel like their family blames them for getting the disease or their spouse...resents them for having to take care of them,” Johnson said. “Lung cancer is an awful disease with a high symptom burden; feeling stigmatized can add a layer of depression and anxiety.”
Johnson and colleagues conducted a small study of patients with lung cancer to examine the influence of stigma on social support, symptom severity, and quality of life, among others.1 They found that about one-third of participants reported experiencing a high level of stigma, which was significantly related to a lower quality of life. There was higher symptom severity for feeling distressed, problems remembering things, and feeling sad. Greater symptom interference was reported related to mood, relations with others, and enjoyment of life. Cancer-associated stigma can come in other forms as well, according to Barbara A. Murphy, MD, director of the Head and Neck Oncology Program and director of the Pain and Symptom Management Program at Vanderbilt-Ingram Cancer Center. “Patients may have stigma associated with sequelae of their cancer,” Murphy said. “For example, a patient with head and neck cancer who has a large surgical procedure with visible scarring or disfigurement may have body image issues.” Such issues can profoundly affect emotions, result in depression, and decrease quality of life. There may also be less visible issues, she added.
“Patients may have chronic fatigue and...no longer [be] able to maintain the same level of activity,” Murphy said. “They often feel a burden because they cannot work or fulfill their family roles in the same way as they used to. On the outside, people will look at them and say they look fine, but they do not feel fine.”
Health care professionals and oncology nurses play an important role in reducing these stigmas and helping patients feel comfortable and welcome. For example, the results of a 2019 survey assessing lung cancer stigma showed that both doctors and nurses felt the most common way patients with lung cancer are treated differently was that they “received less sympathy from medical staff.”2
According to Johnson, one of the best ways a nurse can have a positive effect is by asking the patient, perhaps even in the absence of their caregiver, about their experience. “Be upfront,” she said. “Ask them about how they are feeling and, if they are having issues, connect them to resources that could be helpful, such as therapy or social workers.” In fact, a study of prostate cancer stigma suggested that oncology nurses can improve patient experiences within the health care system and reduce stigmatization by improving psychosocial support. Nurses can improve communication between the patient and the physician and act as navigators to offer informational and emotional support.3
Nurses may even have to look inward to assess their own conscious or unconscious bias toward patients whose diagnosis includes some of the more commonly stigmatized cancers.
“As the whole field becomes more culturally sensitive and inclusive, I think we should also be developing programs that include stigma training,” Johnson said. “Addressing these possible biases would help us to provide the best care we possibly can to our patients.”
Murphy agreed that oncology nurses have an important role to play.
"Nurses are some of the most empathetic human beings I know, and there is a tremendous trust that patients place in nurses...more so than even in physicians,” she pointed out. “One of the important roles a nurse has is providing patients with the opportunity to ‘unload’ in a nonjudgmental environment.”
Nurses can help to educate patients and their families and caregivers to address or reduce stigmas associated with certain cancers, Murphy continued.
“We have to be champions of under-standing,” she said. “We have to constantly remind ourselves that patients are human beings and walk in their footsteps in order to effectively address their problems.”
1. Johnson LA, Schreier AM, Swanson M, Moye JP, Ridner S. Stigma and quality of life in patients with advanced lung cancer. Oncol Nurs Forum. 2019;46(3):318-328. doi:10.1188/19.ONF.318-328
2. King JC, Rapsomaniki E, Rigney M, et al. Lung cancer stigma: a ten-year look at patient and oncology attitudes about lung cancer. J Clin Oncol. 2019;37(suppl 15):11619. doi:10.1200/JCO.2019.37.15_suppl.11619
3. Buote R, Cameron E, Collins R, McGowan E. Understanding men’s experiences with prostate cancer stigma: a qualitative study. Oncol Nurs Forum. 2020;47(5):577-585. doi:10.1188/20.ONF.577-585