The Personal Cost of Breast Cancer
Every one of us has been touched by cancer, whether this has been through a personal experience or that of someone close to us. After lung cancer, breast cancer is the most common form of cancer globally, overwhelmingly affecting women, though a small number of men also get breast cancer.
Breast cancer is the most common cancer in the UK, and the lifetime risk of being diagnosed with breast cancer in UK is 1 in 8 for women. In 2011 around 49,900 women were diagnosed with breast cancer in UK, that’s more than 130 women every day. During the same period approximately 350 men were diagnosed with breast cancer. In the last ten years, female breast cancer incidence rates in the UK have increased by 7%.
Worldwide, it is estimated that more than 1.68 million women were diagnosed with, and approximately 11,600 women died from, breast cancer in 2012, with incidence and mortality rates varying across the world.
Breast cancer affects women of all races, with Caucasian women exhibiting a slightly increased risk of diagnosis, while Black and ethnic minority group women are more likely to die from breast cancer.
The under representation of South Asian women in statistics may indicate the reluctance of people in this ethnic group to be screened. This hints at a continuous thread that is woven throughout the story of breast cancer among South Asians:
- The unfortunate effects of stigma and denial, and
- Perhaps a sense that breast cancer is “not an indian disease.”
The Rise of Breast Cancer in the South Asian Population
A worrying rise in cancer rates among South Asian (Indian, Pakistani and Bangladeshi) people in the UK was revealed by researchers at the National Cancer Intelligence Network Conference in Brighton in June 2013.
South Asian women in Britain have an 8% higher risk of developing breast cancer than British white women, compared to a 45% lower risk ten years ago. Historically the UK’s South Asian population has had fewer cases of cancer than the general population, however recent studies have shown that South Asian rates are quickly catching up to those seen in the rest of the UK.
This increase in cancer risk is set to continue, as it is the younger generation of South Asians experiencing the most marked rise in number of cancer cases. Rates of cancer in general are lower for South Asians, however this may not be true for younger South Asians as that cancer risk is beginning to resemble that of the general population. There is no clear data on why breast cancer incidence has increased so rapidly amongst British South Asian females, however this is most likely due to lifestyle factors, including:
- Having fewer children,
- Conceiving at an older age,
- Decreased duration of breastfeeding, using oral contraceptives,
- Smoking,
- Alcohol consumption,
- Higher fat diets,
- Reduced activity,
- Increasing weight
An increased uptake in screening also contributes to a higher pick up rate.
As cancer emerges as an important health issue for South Asians, it is fundamental that South Asian patients have unlimited and open access to information about cancer, including methods of prevention through lifestyle and diet, and how to spot symptoms early.
The Next Step…
Much like other diseases discussed openly in the West, in many South Asian communities, stigma remains a daunting barrier to both measuring the problem and tackling it.
Inconceivably, unfairly and tragically, shame has entered the equation, often preventing sufferers from acknowledging their conditions or even sharing their status with loved ones. This is all the more tragic for breast cancer as it is a treatable, and often curable disease.
So- how do we address this simmering epidemic, when so many cultural, financial and logistic barriers conspire to deny care to those most in need?
Health Promotion & Raising Awareness
There is still a significant amount of work to be done to improve the degree to which people feel informed about cancer. Awareness is the ‘number one’ strategy to improve cancer prevention and control.
I believe promoting cancer awareness and advocacy involves explaining the importance of self-breast examinations and mammograms. Many of my own friends and family members admit to not performing breast exams despite hearing of other’s ordeals with breast cancer.
Most Asian patients that I meet are unfamiliar with the subject of cancer; they express lack of knowledge of cancer as a disease and its symptoms. They identify a painless lump in the breast as sign of abnormality, but not of cancer. They also are not aware of any non-lump breast symptoms. Within the Asian communities, over half of patients take part in breast screening after encouragement from daughters or relatives. Most south Asians women do not practice breast self-examination.
Removing Cultural Barriers
Perceptions of cancer and health behaviour are influenced by cultural beliefs. Common themes are ‘cancer is a taboo subject’ and ‘cancer is a stigma’.
Patients also express misunderstandings about the cause of cancer. Cancer in the family has ramifications on children’ s marriage prospects and may cause marital breakdown. Terminology used also causes communication problems with healthcare professionals and within the family: the use of ‘chest’ to substitute ‘breast’ changes the meaning of the message conveyed.
There is also a profound reluctance amongst Asian women to talk about such a diagnosis, as not only does breast cancer advocacy requires frank discussion about female anatomy, which is not typically discussed in traditional South Asian communities, but a positive diagnosis could also derail marriage plans for a family’s offspring for fear of passing on ‘bad genes’ to future generations.
‘Indian people would never know a woman at 28 could have breast cancer, because it would never be discussed’ a young 28 year-old Indian professional, who emigrated in 2002 from New Delhi to New Jersey was quoted as saying in a local paper.
Stigma is an attribute that discredits a person, reducing them ‘from a whole and usual person to a tainted, discounted one’. This highlights two important components of stigma:
- The characteristic that makes a person ‘different’ and
- The devaluation of the person on the basis of this difference.
Health-related stigma refers to stigmatization of an illness, and is ‘characterized by exclusion, rejection, blame or devaluation that results from experience, perception or reasonable anticipation of an adverse social judgment about a person or group’.
Final Thoughts:
Cancer continues to carry a significant amount of myths and stigma, however there are opportunities to capitalize upon shifting perceptions and positive change. Where opportunities exist to raise awareness, public education and resource campaigns are required that directly address the cancer-related stigma.
As a young British Indian female, talking about breasts is often considered taboo in my community, as it’s such a private part of the body. After my own personal experiences of and encounters with breast cancer, I am determined to raise awareness in the British Asian community that breast cancer is a disease like any other, and definitely not something to be embarrassed about. Communication is critical to decreasing cancer-related myths and stigma, raising cancer awareness, and disseminating health education.
With a deeply personal understanding of cancer and the stigma this audience attaches to the disease, I feel the need to widely portray my message to aid the removal of such cultural barriers. Cultural beliefs and practices accentuate difficulties in understanding breast cancer, breast screening and breast self-examination. The difficulties South Asian women have in adopting preventative health practices, as cancer is very difficult to bring up with one’s family, makes it extremely challenging to get treatment, in particular if one is being stigmatized.
If you are a South Asian woman or man and you wish to discuss in confidence any aspect of your health or indeed have a preventative health check, do contact ROC Clinic as we will most certainly be able to offer you the best care available in an environment that respects individuals’ traditions, culture and beliefs.
