|Year : 2020 | Volume
| Issue : 2 | Page : 167-168
Cancer stigma – Why don't we sit down and talk about it?
Jarin Louis Noronha
Department of General Surgery, Aintree University Hospital, Liverpool, England
|Date of Submission||11-Feb-2020|
|Date of Decision||12-Feb-2020|
|Date of Acceptance||16-Feb-2020|
|Date of Web Publication||19-Jun-2020|
Jarin Louis Noronha
Department of General Surgery, Aintree University Hospital, Liverpool
Source of Support: None, Conflict of Interest: None
|How to cite this article:|
Noronha JL. Cancer stigma – Why don't we sit down and talk about it?. Cancer Res Stat Treat 2020;3:167-8
A few years ago, I had scheduled Mr. R for surgery. He was a 62-year-old widower from North India and required a mastectomy for curable breast cancer. He had been a challenging patient not attending his scans and scheduled outpatient clinics on time. On the night before his surgery, the nurse informed me that Mr. R had to be taken off the next day's operative list because he did not have an accompanying relative. I visited him in his ward to find a solution to this problem of missing domiciliary support, expecting the chat to last five minutes. However, after half an hour of careful tactical questioning, the root cause surfaced – Mr. R was ashamed that he was a male and as a man, he had contracted breast cancer. This was a 'shameful' piece of information that he could not share with his son. The bottleneck of his therapeutic journey was that he could not manufacture excuses to leave home and attend clinic. This scenario, unfortunately, is not uncommon.
| What is a Stigma?|| |
The Greek word 'stigma' refers to a visible mark imprinted on criminals to allow them to be easily recognized in public. In communal spaces, this physical mark helped citizens identify and shun people with a stigma. In modern times, social stigma enforces discrimination against a person based on perceivable features that reinforce an “us” and “them” mindset. Stigma has been associated with certain diseases historically (tuberculosis, HIV, and mental illness) but has gradually faded as effective treatment modalities and public acceptance of the diagnosis have emerged. Even though more people die of cardiovascular disease and infections each year, cancer still remains, as author Siddhartha Mukherjee aptly puts it, “The Emperor of all Maladies.” Evidence suggests that cancer is a stigmatized disease worldwide shrouded by silence.
| How Do People Perceive Cancer and What Leads to Stigma?|| |
The uncertainty regarding how and why cancer develops is an important factor. As clinicians, we often do not have a straightforward answer as to why individuals are inflicted with this illness, and this opens the doors to different interpretations regarding cancer etiology. Not uncommonly, in many cultures, cancer is viewed as a form of punishment from providence for a sin committed by the victim or one of their family members. The dubious presentation of the disease adds to the mystery of cancer as an enemy. Not all cancers behave alike, some have a relatively indolent course, while others have a propensity to spread in a few days. The rampant ability of humans to spread horrific stories adds to the problem. A 'friendly' neighbor would not hesitate to share a story of a relative who suffered from unbearable pain, the tale of the loss of hair with chemotherapy, and the horrendous sight of weight loss due to cancer cachexia. It is not abnormal to be afraid of something that appears invincible, but ignorance and a lack of information clearly exacerbate fear.
| What are the Effects of Stigma in and Outside the Clinic?|| |
Stigma seriously harms all parties in the doctor–patient–caregiver relationship. Oncologists are commonly asked to keep the diagnosis hidden from the patient's inner circle which propagates silent, solitary suffering. This decision is partly influenced by the reports that a cancer diagnosis leads people to see you as less than the person you were. This kind of denial and avoidance perpetuates social isolation and negatively impact the quality of life. A fatalistic attitude has frequently contributed to patients 'believing' that there is no cure and opting out of receiving curative treatment. For end-stage cancer, families are known to avoid palliative care altogether and thus increase the morbidity of cancer, increase suffering, and decrease the function of patients.
Understandably, this pessimistic impression of cancer can lead patients to not accept the diagnosis. If people are worried that they may have cancer; they may conceal this apprehension because, when people are stigmatized, they shy away from discussing the matter. Moreover, in not talking about cancer, misconceptions grow and a vicious cycle ensues. Patients aside, family members are additional recipients of cancer-related stigma. Patients have reported that their children's marriage prospects have been harmed over irrational fears that their cancer is hereditary. Zooming out further, stigma is known to affect the development of anticancer treatments based on the public's perception of a disease and this remains the status quo till victims themselves have an elevated voice to demand changes. For example, funding for lung cancer research is lower than most cancers due to public perception that lung cancers are tobacco related even though over half of those diagnosed in the US have never smoked or quit smoking many years earlier.
| What Can Be Done to Allay Stigma – what Do You and I Need to Do?|| |
The burden falls on the physician, the patient and society at large to dismantle this stigma at our pace. A cancer survivor bearing a visible mark of cancer caused by the disease or its treatment (e.g., a mastectomy scar, loss of hair, etc.,) visible to society poses a major difficulty. Offering effective treatment with higher cure rates, lower recurrence rates, and lower morbidity of treatment are goals oncologists, and researchers are constantly working on. The evolution of breast surgery from Halsted's radical mastectomy a century ago to breast conservation surgery and whole breast reconstruction today is one such example. The temporal trends in the long-term cancer survival are encouraging with the introduction of newer therapies. Championing initiatives to aid effective communication by oncology workers will lead to reductions in cancer-related stigma, raise awareness about the disease, and progressively destroy misconceptions. While keeping an open channel for dialog about the difficulties faced by patients is important, calling out conscious or unconscious discriminatory behavior are other methods that push us in the right direction.
While patients can help propagate stigma by following social norms and keeping the diagnosis hidden to avoid public speculation, we as oncologists, should encourage them to embrace the diagnosis and engage loved ones to be a part of the therapeutic process. This puts the fear, mystery, and sense of isolation attached with cancer at a disadvantage. After treatment completion, patients who return to their villages and towns are key resources for the dissemination of information. Elevating the voices of survivors not only reduces stigma but also urges people to take ownership of their own health and behave more empathetically to cancer patients and survivors. Heavy impact can be expected from the involvement of the population at large using mass media and social media as adjuncts to dismantle myths spread about the causes and treatment of cancer. Schools form another promising space to disseminate cancer education and increase the awareness with potential for high returns on investment.
Getting back to my story – Mr. R agreed to get me on the phone with his son and discuss the diagnosis. His son was very concerned and anxious to know whether his father would be alright. Not only did Mr. R's son reach the hospital for his father's surgery, he was also supportive during the chemotherapy sessions that followed. Mr. R did well after completing his treatment and when I met him a couple of years later, he was happier about his family being involved with his cancer than the fact that his disease was in complete remission. It is encouraging to know that people are ready to listen to reason and change their behavior. We must capitalize on these positive shifts in attitude and dismantle stigma on our way to defeating cancer.
| References|| |
Daher M. Cultural beliefs and values in cancer patients. Ann Oncol 2012;23 Suppl 3:66-9.
Shen MJ, Wellman JD. Evidence of palliative care stigma: The role of negative stereotypes in preventing willingness to use palliative care. Palliat Support Care 2019;17:374-80.
Else-Quest NM, Jackson TL. Cancer stigma. In: Corrigan PW, editors. The Stigma of Disease and Disability: Understanding Causes and Overcoming Injustices. Washington, DC, US: American Psychological Association; 2014. p. 165-81, xi.
Visbal AL, Williams BA, Nichols FC 3rd
, Marks RS, Jett JR, Aubry MC, et al
. Gender differences in non-small-cell lung cancer survival: An analysis of 4,618 patients diagnosed between 1997 and 2002. Ann Thorac Surg 2004;78:209-15.