Addressing the Burden of Cancer Stigma

While cancer is discussed with increasing openness thanks to widespread awareness efforts, pervasive stigmas continue to weigh on cancer communities. Such stigmas can be reflected through stereotypes or unwillingness to discuss cancer. As a result, people with cancer may feel anxious or socially isolated, leading to delayed screening and poor treatment adherence – which can have a negative impact on health outcomes.[i],[ii] It is critical that we continue to shed light on stigmas around these all-too-common cancers.

Lung cancer is an example of how stigmatization can affect patients. Often, people think of lung cancer as a death sentence. It’s true that lung cancer causes more deaths in the US each year than colon, breast and prostate cancer combined, but with early treatment, many lung cancer patients can have a more positive outcome. Unfortunately there is generally a lower level of public knowledge, research funding and awareness about early detection.[iii],[iv],[v] This could be partly driven by the association between lung cancer and cigarette smoke, which can lead to perception that the disease is self-inflicted, even though lung cancers among non-smokers is increasing.[vi],[vii] ?It is imperative that we work to reduce lung cancer stigma through education about early diagnosis and about treatments that can have positive, long-term outcomes when initiated early in the disease. ?

Stigmatization can also be influenced by bodily changes associated with either cancer or treatment that can lead to withdrawal from social relationships and distress. There are many unknowns with cancer, understandably contributing to fear among patients and loved ones. People may fear death or treatment side effects, or they may have concerns about how others will view them, and the stigma, which creates fear: fear of death; of side effects; of stigma and discrimination; of people looking at you differently because you are a cancer patient. Other concerns may emerge depending on the type of cancer. For people living with prostate cancer, they may feel a loss of the male identity due to effects of treatment such as incontinence and sexual dysfunction.[viii],[ix] For people with colorectal cancer, stigmatization is particularly strong among younger adults and among those with a colostomy.[x] With liver cancer, although there are many risk factors, many people feel judged because of the link with alcoholism – which results in less likelihood of seeking care and worse quality of life.[xi]

Stigma is a complex issue that demands a multifaceted approach, and everyone has a role to play to combat cancer-related stigma:

• Encourage better understanding and awareness about how frequently cancer occurs
• Raise awareness about the importance of early diagnosis and its potential to positively impact outcomes
• Improve public information about cancer treatment, with the goal of minimizing fear associated with side effects
• Advocacy and healthcare decision-makers need to continue working together to promote self-efficacy, including early detection screening and patient education
• Improved training is critical for healthcare professionals in interacting with patients in an empathetic way that removes unconscious biases
• Healthcare systems also need to address the needs of the whole person living with cancer, which includes providing patient navigation or psychosocial counseling

For people living with cancer, the emotional, social and psychological toll of stigmatization can be a significant barrier to care and can negatively impact quality of life. From pioneering innovative medicines to changing community perceptions, our focus is to ensure that the era of cancer-related stigma ends as we work together towards eliminating cancer as a cause of death. If you or a loved one have symptoms or have missed a screening, I urge you to get it checked out!

[i] Ernst J, et al. Perceived stigmatization and its impact on quality of life - results from a large register-based study including breast, colon, prostate and lung cancer patients. BMC Cancer. 2017 Nov 9;17(1):741.

[ii] Akin-Odanye EO, et al. Impact of stigma and stigma-focused interventions on screening and treatment outcomes in cancer patients. Ecancermedicalscience. 2021 Oct 25;15:1308.

[iii] American Lung Association. Addressing the Stigma of Lung Cancer. Available at: https://www.lung.org/getmedia/54eb0979-4272-4f43-be79-9bef36fab30b/ala-stigma-of-lc-2020-v1.pdf. Accessed November 2022.

[iv] American Cancer Society. Key Statistics for Lung Cancer. Available at: https://www.cancer.org/cancer/lung-cancer/about/key-statistics.html. Accessed November 2022.?

[v] Kamath SD, et al. Comparison of Cancer Burden and Nonprofit Organization Funding Reveals Disparities in Funding Across Cancer Types. J Natl Compr Canc Netw. 2019 Jul 1;17(7):849-854.

[vi] Ostroff JS, et al. Lung cancer stigma and depression: Validation of the Lung Cancer Stigma Inventory. Psychooncology. 2019 May;28(5):1011-1017.

[vii] American Lung Association. Addressing the Stigma of Lung Cancer. Available at: https://www.lung.org/getmedia/54eb0979-4272-4f43-be79-9bef36fab30b/ala-stigma-of-lc-2020-v1.pdf. Accessed November 2022.

[viii] Buote R, et al. Understanding Men's Experiences With Prostate Cancer Stigma: A Qualitative Study. Oncol Nurs Forum. 2020 Sep 1;47(5):577-585.

[ix] Buote R. et al. Understanding Men’s Experiences With Prostate Cancer Stigma: A Qualitative Study. ONF 2020, 47(5), 577-585.

[x] MacDonald LD, et al. Stigma in patients with rectal cancer: a community study. J Epidemiol Community Health. 1984 Dec;38(4):284-90.

[xi] Schomerus G, et al. The stigma of alcohol-related liver disease and its impact on healthcare. J Hepatol. 2022 Aug;77(2):516-524.