During graduate school, I learned about breast cancer stigma and the role it played in breast cancer prevention, diagnosis, and treatment. When we think of stigma in health, HIV or AIDS may come to mind; however, women and men (read Breast Cancer in Men) around the world have experienced stigma due to breast cancer.
Here are the facts:
- Breast cancer is the most common type of cancer among women
- In 2012, 1.7 million women around the world were diagnosed with breast cancer
- Approximately 500,000 women die from cancer each year
- The incidence rates vary from 27 per 100,000 in Middle Africa and Eastern Asia to 92 per 100,000 in North America1
- Nearly 50% of breast cancer cases and 58% of deaths occur in less developed countries2
A lack of education, access to adequate healthcare, and medical bias are a few factors that may impact data; outside of family history, genetics, age, lifestyle factors, and even cultural beliefs. However, stigma may also play a role in the number of people seeking care at later stages and dying.
Why the stigma?
“I think about fear, death, and loneliness.” – Uknown3
The association between cancer and death is a major cause of stigma.4 Personally, I remember being a teenager when I found a lump on my right breast. My first thought was cancer. Afraid to tell my mother, I waited a few days until I finally said something. Thankfully, the lump was only an abscess that I was able to treat with antibiotics. Others may not have the same experience.
In a recent article published by BioMed Central, Breast cancer stigma among Indonesian women case study of breast cancer patients, participants in a breast cancer study had, “negative perceptions towards breast cancer screening because of their experience of fear and shame,” and the “fear of suffering from the disease” was even greater.4 One participant did not seek care for 3 months when experiencing pain, and other participants were diagnosed with an advance stage of cancer when they sought care.4
“If you get treatment early enough, they say you should be ok…it could be the end.” – Unknown3
A cancer study conducted in South Africa found similar findings regarding stigma.5 Participants stated that a physician’s diagnosis was important, but that cancer would lead to negative perceptions from community members.5 A key finding from this study revealed that stigma resulted from the belief that HIV/AIDS and cancer were the same. According to the study, “cancer stigma due to conflation of stereotypes of deadliness associated with HIV may contribute to negative consequences, including social isolation.”
While there continues to be stigma regarding breast cancer, the rates of survival have improved because more people are being diagnosed at an earlier stage.1
What are some ways that stigma is being combated?
Education – Education is a means to combat cancer stigma by clearing misconceptions and increasing knowledge. Healthcare professionals, especially community health workers, can provide this education.
Awareness – Events like Relay for Life bring awareness to breast cancer and empowers many.
Community outreach programs – Community outreach programs can provide education in a formal or informal way. They may also serve as a support system for survivors and those battling cancer.
Increasing social support – One of the reasons some are afraid of getting screened for breast cancer is because they perceive they’ll receive a negative reaction from those close to them. Educating families and increasing social support between patients and their families may help with early detection and treatment.
Times are steadily changing, and we’re living in a world where education and information is within close reach for many. Nevertheless, we have more to do to combat stigma when it comes to cancer; especially when it comes to stigma related to breast cancer in men, and other types of cancer that are often overlooked and not widely spoken of.
World Cancer Research Foundation/American Institute for Cancer Research. (2018). Retrieved from https://www.wcrf.org/sites/default/files/Breast-cancer-report.pdf.
World Health Organization. (n.d.). Breast Cancer Prevention and Control. Retrieved from https://www.who.int/cancer/detection/breastcancer/en/index1.html.
Livestrong. (n.d.). Cancer Stigma and Silence Around The World: A Livestrong Report. Retrieved from https://www.livestrong.org/sites/default/files/what-we-do/reports/lsglobalresearchreport.pdf.
Solikhah, S., Matahari, R., Utami, F.P. et al. Breast cancer stigma among Indonesian women: a case study of breast cancer patients. BMC Women’s Health 20, 116 (2020). https://doi.org/10.1186/s12905-020-00983-x
Oystacher, T., Blasco, D., He, E., Huang, D., Schear, R., McGoldrick, D., Link, B., & Yang, L. H. (2018). Understanding stigma as a barrier to accessing cancer treatment in South Africa: implications for public health campaigns. The Pan African medical journal, 29, 73. https://doi.org/10.11604/pamj.2018.29.73.14399