The rate of women contracting breast cancer worldwide can never really be truly quantified, as methods of diagnosis are evolving. There have been so many revelatory studies undertaken over the past decade that many countries have changed their screening processes for the illness. Many other projects for research and treatment have seen huge swathes of their budgets change focus because of it.
In the MENA region, breast cancer is seen as a taboo and receives little public attention. Even though breast cancer mortality rates have declined from 8.7 for every 100,000 women in 2009 to 5.0 for every 100,000 women in 2014 in the UAE, many still see it as a problem. According to statistics from healthcare providers given to the Gulf Times, this is part of a new trend that also gives encouraging signs such as late detection of the disease dropping from 64% in 2009 to 16% in 2013.
Breast cancer deaths have fallen by more than a third over the past three decades around the world, and this is encouraging. In the UK alone, breast cancer mortality rates have decreased by 35% since the early 1970s. However, a group of researchers from the UAE led by Dr Yusra Elobaid, from the Institute of Public Health, College of Medicine and Health Sciences, at the United Arab Emirates University in Al Ain, published a study in the past year that shows issues with diagnosis procedures in the UAE. These issues do not stem from medical deficiencies in the planning and healthcare sector but rather from the women themselves – the culture and lack of education they have around breast cancer.
It’s well known in many countries around the world that early detection is the key to getting the best results from breast cancer treatments. This has long been the focus of campaigns and healthcare education tactics in Western countries, despite concerns from some practitioners who believe the treatments have become too invasive. They do not believe women with minor benign tumours should go under the knife, contending that these benign problems could, in all good conscience, be ignored for several years – if not, forever – and might never develop into cancer.
Elobaid specialises in epidemiology, public health and health psychology. Her team has extensive experience in the education and psychology around breast cancer, and she believes that it is a lack of awareness in the UAE and other MENA countries that prevent more women from accessing treatments.
“Delayed help-seeking behaviour, with poor survival as a consequence, is an important public health issue in the Middle East,” the study’s authors say. “More than 75% of breast cancer patients in the UAE seek medical advice after experiencing a sign or symptom of the disease, and many seek such advice late.”
Elobaid’s study set out to explore the factors that influenced delayed presentation for treatment after self-discovery of symptoms consistent with breast cancer in Arab women in the UAE. The study also examined facilitators and barriers to women’s health-seeking behaviour in the complex, religiously dominated society of the UAE. Researchers interviewed breast cancer survivors aged 35 to 70 who had experienced delayed presentation to treatment after symptomatic recognition of their cancer.
According to Elobaid, women waited anywhere from three months to a shockingly high three years to seek medical help after their initial experience of symptoms consistent with breast cancer. She says the key recurring themes that emerged from interviews with these women were varied responses to symptom recognition, fear of societal stigmatisation and concerns regarding abandonment by spouse because of breast cancer.
Changing times in the Middle East are causing a cultural shift that is welcomed and resisted by various parts of society. However, culture still has a strong influence on the decisions of women in UAE society, says Elobaid. The lack of awareness about signs of breast cancer and routine screening has an important effect on symptom appraisal and subsequent decision-making regarding options for treatment.
The three main themes identified through analysis of the research were: symptom recognition and appraisal, the role of community and social network, and healthcare delivery system. When it came to symptom recognition and self appraisal, many of the women were not knowledgeable enough about the symptoms of breast cancer and did not know what options were available. Signs of breast cancer were attributed by some participants to other diseases or to an unrelated event that occurred beforehand. “One of the women interviewed thought that the breast lump was due to a fall she had prior to discovering it. This attribution contributed to a long delay in seeking medical attention until symptoms of advanced disease appeared,” the researchers write.
One of the sadder aspects that Elobaid says emerged in the interviews is the way UAE society views breast cancer survivors. “Members of society do not want to talk about cancer survivors, not because they are ashamed of them, but because of the inadvertent bad publicity,” she says. The study shows that most of the participants disclosed that nobody around them knew about their cancer diagnosis. They would rather ‘keep quiet and not share this news with anybody’ because they did not know how people around them would react to the information. Others were convinced that they would be treated badly and that their families would suffer with them.
The UAE has launched many new initiatives to improve its healthcare sector and education policy in the past decade with mitigated successes and the odd failure. The government is determined to bring down cancer fatalities by nearly 18% by 2021 and approximately 4,500 new cases of cancer nationwide are reported in a year, which means 12 new cancer cases a day, according to the Abu Dhabi Health Authority.
Elobaid and her team are critical of the cultural practices in the Middle East that inadvertently prevent women and their families from seeking help. The cultural practices are not unknown – women’s place in MENA societies means they have a complicated route to access healthcare. She reiterates that there is a lack of good government services to educate the public. “One of the bigger issues the study raises is the lack of education and public health knowledge that permeates in MENA countries,” she says. “The governments of these lands, particularly in the UAE with its cosmopolitan society and growing reputation as a medical tourism hub, must educate women and the public at large about possible signs of common cancers.”
As in other countries, one of the most effective ways of lowering mortality rates from cancer can be to engage the public in an education campaign around possible signs or symptoms. This also includes engaging public health bodies in organising more campaigns and funding for mammograms, and other common medical checks that focus on cancers.
The research from Elobaid and her team shows several problems with the diagnosis and treatment of breast cancer in the UAE, and suggests things to be done. “Our findings suggest that culture has a great effect on the decision-making of women with cancer. The lack of awareness about signs and symptoms of breast cancer and routine screening has a major effect on symptom appraisal and consequently informed decision-making,” the study concludes.
“However, national efforts are needed to address specific benefits of early detection and to increase the awareness about these benefits. In the Middle East, it has been commonly assumed that late diagnosis of breast cancer is due to a lack of knowledge and insufficient information about screening programmes. There is a lack of research findings on the reasons behind delayed presentation of female breast cancer.”
Elobaid believes however that it’s “shyness” that stops women from coming forward. And critically, it’s the delay in presenting after discovering their lump that could be the massive problem. The study shows that the problem reaches across the Arab world, and comes down to the issue of income and levels of engagement with healthcare in developing countries. “[Even among] women [who had] self-detected breast lumps in 90.6% of cases in Iraq, only 32.0% sought medical advice within the first month,” she says.
“These observations reflect the poor breast health education of women and the lack of knowledge about breast cancer screening. The literature from developing countries suggests that the advanced disease at presentation is a reflection of the cultural norms that downplay women’s health problems.”
Elobaid’s research backs up the case that the improved survival rates of breast cancer in the US and Europe are related to an earlier stage at presentation instead of improved treatment – namely, women receiving constant checks and monitoring from state healthcare, and being more aware of the signs of the disease from healthcare education campaigns. While it may take generations to deal with the cultural conservatism around the disease, research has now identified these problems within the diagnostic sphere. The onus is now on fixing them.
Breast cancer statistics
- There were 1,768 new cancer cases reported every year in Abu Dhabi, according to the Abu Dhabi Health Authority.
- Breast cancer constitutes 43% of cancers diagnosed among women and 25% of all cancers diagnosed among both sexes.
- Cancer is the second-biggest killer of women in the UAE.
- Arab women are more likely to develop breast cancer at an earlier age.
- Abu Dhabi has a programme allowing Emiratis a free annual screening after they turn 40 but provision in other emirates varies.
- 98% of those with breast cancer can survive if the cancer is detected early.
- 80% of breast lumps are benign.
- 80% of all cancerous lumps are found by women themselves.
- Source: WHO, Cancer Registry Report and the Centre for Arab Genomic Studies