“There’s no worse disease than ignorance” – Cancer survivor, Mexico
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. Now, for the people naive to the logistics of an Indian hospital system, not having a relative with an admitted patient, is sacrilege. Here, a relative is necessary to pay bills, collect medicines, feed the patient and help them use the restroom. I visited Mr R in his ward to have a chat with him in order to find a solution to this problem of a missing relative, expecting the chat to last five minutes. However, after half an hour of careful tactical questioning, I was able to identify the root cause – Mr R was ashamed that he was a man and a man had contracted breast cancer. A shameful piece of information that he couldn’t share with his son. Mr R resided with his son, so he had to regularly manufacture excuses in order to leave the house to attend the clinic. This bottleneck leads to delays and gaps in his therapeutic journey. This scenario, unfortunately, is not uncommon.
What is a stigma?
Stigma is a Greek word that originally referred to a kind of tattoo mark cut or burned into the skin of criminals, slaves, or traitors in order to visibly identify them as blemished or morally polluted.
In public spaces, this physical mark helped citizens identify and shun people with a stigma attached to their body. In modern times, social stigma is the disapproval of, or discrimination, against a person based on perceivable social characteristics that serve to distinguish them from other members of society. Culture, gender, race and health are common factors that create an “us” and “them” mindset.
Stigma has been associated with certain diseases historically but has gradually faded as effective treatment modalities, and public acceptance of the diagnosis have emerged. While the Western world slowly moves away from stigmatising Tuberculosis, HIV and mental illness, India continues to have a stigma attached to these diseases, albeit in smaller doses compared to a couple of decades ago. India’s disease profile is changing with cancer catching up with cardiovascular disease as the leading causes of death. 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”. Cancer is a diagnosis that drives fear even in the hearts of champions, both doctors and laymen alike. Evidence suggests that cancer is a stigmatised 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 aetiology. 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 disease adds to the mystery of cancer as an enemy. Not all cancers behave alike with different cancers behaving like soldiers with different strategies during war. Some cancers are guerrilla-like in their approach- they raid and then hide without giving an indication of when the next onslaught will occur, others are like a specialised task force set out to kill the victim within a week while most cancers set in for a long siege of their unlucky host. This unpredictable nature breeds more fear about the disease.
The rampant ability of humans to spread horrific stories adds to the problem. A “friendly” neighbour wouldn’t hesitate to share a story of a relative who suffered from unbearable pain, the tale of loss of hair with chemotherapy and the horrendous sight of weight loss due to cancer cachexia. It isn’t abnormal to be afraid of something that appears invincible, but ignorance and a lack of information clearly propagates exacerbated fear. While not all forms of cancer are incurable, the chance of incurability increase with stage if presentation, although there is always a possibility of recurrence of cancer.
What are the effects of stigma – In and outside the clinic?
Stigma breeds silence, which fuels the fear and ignorance that feeds the stigma.
Stigma seriously harms all parties in the doctor-patient-caregiver relationship. Just like in Mr R’s case, 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 reports that being diagnosed with cancer leads some people to see you as less than the person you were. I have been informed by patients that friends they were close to avoid them, people don’t feel at ease with you, and community members sometimes behave in hurtful or discriminatory ways. This kind of denial and avoidance perpetuate social isolation and negatively impact the quality of life.
There are some nuances of practice on the Indian subcontinent, which makes work slightly more difficult as the decision-making process involves the head of the family and not the individual in question. A common request by caregivers is to hide the diagnosis of malignancy from the patient to “avoid robbing the patient of hope and sleep due to crippling fear”. This fatalistic attitude has frequently contributed to decision-makers “believing” that there is no cure that can be offered and patients 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.
Not surprisingly, such negative beliefs, attitudes and behaviours can make people reluctant to admit that they have cancer, or even that they are worried they may have cancer. My colleagues and I have found ourselves lamenting that a breast lump could have lead to early detection of breast cancer if “shyness” had not deterred a visit to the clinic.
Research shows that when people are stigmatised, they shy away from talking about the issue. And in not talking about cancer, misconceptions grow, and a vicious cycle ensues. Breaking this vicious circle would make life easier for people with cancer and can ultimately change public attitudes towards prevention and early detection.
Patients aside, family members are additional recipients of cancer-related stigma. Fears that it is hereditary can ruin the marriage chances of those with a mother or father known to have had cancer. Travelling further from the clinic, governments and health-care systems are less likely to devote resources to challenge their cancer burden if individuals affected by the disease are reluctant to express their needs or to advocate for themselves. Stigma has even further ramifications, including the way diseases are studied, and therapeutic drugs are developed. 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 with lung cancer in the US have never smoked or have quit smoking many years earlier.
What can be done to allay stigma – What I need to do and you need to do?
Cancer is a disease and not an immediate “death sentence” to rob one’s dignity
The best way to destroy cancer-related stigma would be the prevention of cancer completely. Regrettably, we haven’t got there yet! So, 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 encouraging news is that things have gotten much better with time – 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 long term cancer survival are encouraging, especially with breast and rectal cancer with the introduction of newer therapies. This information must be effectively passed on to the patient and other caregivers during the first visit. Going further, initiatives to help health workers communicate better with patients and the wider public about cancers should be encouraged as communication is critical to decreasing cancer-related stigma, raising cancer awareness, and disseminating cancer education. While keeping an open channel for dialogue about the difficulties faced by patients is important, calling out conscious or unconscious discriminatory behaviour are other methods which 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 are key resources for dissemination of information. Studies have shown that elevating the voices of survivors not only reduces stigma, it also urges people to do something positive for their own health and respond more empathetically to people with cancer.
The maximum impact can be expected from the involvement of the population at large with increased cancer awareness via mass media and social media with easy access to information regarding the causes and treatment of cancer (multiple patients relatives have asked me in hushed tones whether cancer can spread to other members living under the same roof). The school system represents a potential venue for cancer education, and increasing cancer awareness among children may be an investment with high returns.
Going back to my story – Mr R agreed to get me on the phone with his son and discuss the diagnosis after some coaxing. 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, but he was also supportive during chemotherapy sessions that followed. Mr R did well after completing his treatment, and I bumped into him a couple of years later in the corridor. 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 behaviour. We must capitalise upon these positive shifts in attitude and leverage these shifts to disseminate information on our way to defeating cancer.
P.S: The views expressed in this article are the personal views of the author.
The Author: Dr. Jarin Noronha is a Surgical Oncologist that has trained at some of the most prestigous institutes in India including St. John’s Medical College, Lokmanya Tilak Municipal General Hospital And Medical (Sion Hospital) and at the Tata Memorial Hospital, Mumbai. His passion for medicine is only matched by that for writing and travelling!