The no. 1 reason for death from breast cancer is late detection and delayed treatment. — Photo by Miguel Á Padriñán/Pexels
MY mother was diagnosed with breast cancer when I was 18 years old. My mother’s case, similar to most cases in Malaysia, was late detection. Not because of the lack of awareness of breast cancer, however, but because her very own doctor dismissed her symptoms … three times!
Misdiagnosis and late diagnosis at the primary care level often result in delays in referral. The waiting time for breast cancer diagnosis can range from two weeks to six months with almost 50 per cent notified more than six months after consultation.4
Yet, the no. 1 reason for death from breast cancer is late detection and delayed treatment, with the likelihood of five-year survival for breast cancer dropping from 88 per cent at Stage 1, when it is localised in the breast, to a mere 23 per cent at Stage 4, when the cancer has spread to other parts of the body.5
Living in Kuching, the capital of Sarawak, my mother and I had direct access to Sarawak General Hospital, the one and only cancer care public tertiary hospital, and my mother was able to get timely treatment. But how about those residing hundreds of kilometres outside of Kuching? Twenty-five per cent of the Malaysian population live more than 100km away from radiotherapy facilities.1
Sarawak, the largest state in Malaysia, has an area of 125,000km2 with a population over three million, consisting of over 30 ethnic groups – and only ONE public hospital with complete cancer care facilities. Compare this to Selangor, which has 15 cancer-specialised hospitals.2
In Sarawak, living far from hospitals, lack of transportation access, lack of financial means, and inadequate knowledge about cancer often hinders patients from following up after screening and diagnosis, compromising chances of successful treatment.
Therefore, increasing the awareness of breast health and breast cancer in identifying early signs and symptoms, as well as implementing early detection programmes and better access to care centres, are vital to improving the chances of surviving breast cancer in Malaysia.
Despite their availability of subsidised mammogram screening, however, local studies have reported that only 10 to 30 per cent of women in urban locations of Peninsular Malaysia submitted to screenings and less than 10 per cent of women in the rural areas of Perak and Pahang.6 There is no data for East Malaysia, which covers 60 per cent of the total land mass of the country.
There are several reasons for this.
Cancer is still a taboo topic in Malaysia. Most women, especially Malaysian Chinese believe that the word ‘cancer’ brings negative energy and that the disease could be contagious.
There are also significant cultural barriers to care. For instance, Malaysian men are legally allowed to have more than one wife and Malaysian women are fearful of being rejected and losing their partners to another woman.
Furthermore, women in Malaysia still struggle against many forms of economic and social injustices, as well as religious beliefs that profoundly affect women’s way of life, such as being blamed for the sexual violence directed at them.
Even now, despite seeing women’s rights frequently addressed, there remains a strong stereotypical view of women with limited roles and high dependency on men. For this reason, most women perceive breast cancer as a threat to their femininity, do not screen or delay consulting a doctor, and therefore end up presenting with late-stage or advanced cancer.
Sadly, but ironically, these women’s fears of losing a breast have a much great chance of becoming reality, as more advanced cases of breast cancer limit options for conservative surgery.
Finally, there are language constraints, spiritual beliefs, and a fatalism culture equating cancer with a death sentence that prevail among the indigenous communities of Borneo, where most diseases are interpreted as ‘Black Magic’. It is important for the medical community to be sensitive to these cultural norms, as failing to understand and communicate about the people’s usage of traditional medicine and healing practices may result in a patient’s dissatisfaction and non-compliance with existing bio-medical treatment.
On the occasion of World Cancer Day on Feb 4 and the ‘Close the Care Gap’ campaign organised by the Union for International Cancer Control (UICC), we wish to issue an urgent call to understand better the barriers in access to breast cancer awareness in Malaysia and particularly among the marginalised populations living in Borneo.
What is essential is the need for culturally appropriate breast health instrumentation and educational materials. Perhaps even more important is the need for healthcare providers to consider culture-specific and language-specific barriers that impede breast health screening access, early detection, treatment, and follow-up.
We strongly urge every woman to do their part in fighting against the stigma of breast cancer for the sake of future generations.
References
1. Yahya N, Sukiman NK, Suhaimi NA, Azmi NA, Manan HA. ‘How many roads must a Malaysian walk down? Mapping the accessibility of radiotherapy facilities in Malaysia.’ PLoS ONE 2019 Mar; 14(3): e0213583.
2. ‘White Paper – Cancer Care Challenges, Gaps ad Opportunities in Malaysia (Policy for Action 5/2021)’. Kuala Lumpur: Galen Centre for Health and Social Policy; 2021. 35 p
3. National Institutes of Health, Ministry of Health Malaysia. ‘National Health and Morbidity Survey (NHMS) 2019: Vol. II: Healthcare Demand. 2020’.
4. ‘Galen Centre for Health and Social Policy. Event Report – One Year After the World Cancer Congress: Progress, Gaps and Opportunities.’ Kuala Lumpur: Galen Centre for Health and Social Policy; 2019.
5. Malaysian Study on Cancer Survival (2018).
6. Mahmud A, Aljunid SM. ‘Availability and accessibility of subsidized mammogram screening programme in peninsular Malaysia: A preliminary study using travel impedance approach.’ PLoS One. 2018 Feb 1;13(2):e0191764. doi: 10.1371/journal.pone.0191764.
Dr Melissa Lim Siaw Han is a Society for Cancer Advocacy and Awareness Kuching (SCAN) committee member.