Breast cancer, a costly taboo

Breast cancer is the most common form of cancer women across the world, including in India. In fact, breast cancer accounts for a third of all the cancers that affect women in the country. In recent years, it has overtaken cervical cancer in terms of incidence as well as mortality. Oncologists have expressed concern over the fact that Indian women have been found to display more aggressive forms of cancers at relatively younger ages as compared to those in western countries. Unfortunately, the prevalence of taboo and lack of awareness results in late presentation of the disease. At the same time, poor breast cancer screening practices further compound the problem of late diagnosis. According to an ICMR study, the age-standardised rate of breast cancer is approximately 25.8 per one lakh women and is expected to rise to 35 per one lakh women by 2026.

Late presentation

Indian women live with the largest number of health-related problems, and paradoxically with the least number of systemic approaches to tackle them. Early diagnosis of breast cancer accounts for only 30% of all reported cases in India, compared to 70% in the developed world. Since 70% of patients are diagnosed with cancer when the disease is far too advanced (stage 3 or 4), the mortality rate is very high.

It is estimated that the five-year survival rate decreases by 2.7 times for breast cancer when it is detected at stage IV as against stage I. Similarly, treatment cost for late-stage cancers is 1.5 to 2 times higher. Late-stage presentation is precipitated by two major factors — the absence of proper breast cancer screening programs, and the lack of participation of patients in such programmes. There are a number of reasons behind this — lack of awareness and access to quality healthcare facilities, and socio-cultural attitudes. For a screening program to be successful, the coverage and participation has to be high, and the referral system for the diagnosis and treatment has to be effective.

The situation for breast cancer screening is far worse than the screening programs for cervical cancer. Although there is no organized program for screening for cervical cancer, there is a degree of screening. For instance, when women visit a healthcare facility for availing reproductive facilities or for a consult regarding gynaecological issues, physicians generally order a Papanicolaou test to check for cervical cancer as a precautionary measure. However, we do not have an organized screening program for breast cancer.

Community workers

The reason for delayed diagnosis is that the disease is asymptomatic in the early stages, with just a painless lump. Women are either unaware of what the lump means or fear the stigma of rejection by their partner and community. There is a major taboo against discussing breast cancer openly, and many of the women are under the erroneous notion that there exists no effective therapy or treatment for the disease. By promoting preventive behaviour among individuals, it is possible to make them understand if they are susceptible to the disease, understand the severity of a possibly serious consequence, and the perceived benefit of a positive outcome through an effective course of action.

Globally, the most widely implemented tools for a breast cancer exam include mammography, clinical breast exam, and self-exam. Mammography and clinical breast exams can help reduce the mortality toll by down-staging of the disease in asymptomatic women. Self-exam is the most feasible and reasonable approach for diagnosing and preventing the late-stage disease presentation. Trained health workers can help disseminate knowledge about the condition and encourage women to carry out a self-exam. Indians show a higher acceptance of health workers as educators. Accredited Social Health Activists (ASHA) must be trained to provide self-exam training for women. Since most of them are female and from the same community, it is easy to strike a rapport with women.

Once we successfully mobilize awareness, we can use opportunistic screening to generate the need for organized screening at the primary level and train more women to perform self-exams. Training women with the help of community health workers can help set off a chain reaction that can bring down instances of mortality. Although it will not eliminate the disease, it surely holds promise and will help reduce the disease burden and stigma associated with breast cancer to a large extent.

(The writer is the founder of Gramin Healthcare)