“When I told my husband, I had breast cancer, he said, ‘I don’t want anything to do with you. You can go die,’” laments a 45-year-old divorced and homeless Bangladeshi woman. What seems harsh, is unfortunately, the reality that many women of Asian ethnicity are facing, globally.

A westernised approach for screening and follow-up appointments, meant that women from non-western backgrounds are left out of the narrative. This creates a gap in knowledge about screening and treatment, which means by the time these women are diagnosed with cancer, it is usually too late. Therefore, regarded as a ‘death sentence’, it creates a stigma that further prevents women from seeking medical help.

Multiple stigmas cause Asian women to hide their disease

One stigma that encourages patients to hide their disease is physical. Pravina Patel, a South Asian woman living in the UK who was diagnosed with breast cancer at the age of 36, said there was a reluctance for women to go for a pap smear test because they did not want to be "defiled" or be considered "no longer pure".

For others, religion comes in to play. Betty De Guzman, a Filipino-American who was diagnosed with Stage 3 breast cancer at age 62, remarks, “many Filipinos believe in superstition. They are afraid to come out about it [cancer] because it would seem they had done something to deserve it… They’re ashamed of it.”

Bharti Patel (centre), co-founder of the Asian Women Cancer Group (AWCG), with fellow members, Bharti Patel (left) and Shaila Rasania (righst). Photo credit: Teri Pengilley/Guardian.
Bharti Patel (centre), co-founder of the Asian Women Cancer Group (AWCG), with fellow members, Bharti Patel (left) and Shaila Rasania (righst). Photo credit: Teri Pengilley/Guardian.

Breast cancer, a primarily woman’s disease also has sexual connotations. "You don't talk about your breast cancer to the outside world. You don't even say the word 'breast'. It's just too private," echoes Bharti Patel, a breast cancer survivor and chairwoman of the Asian Women Cancer Group (AWCG) in the UK. The group aims to give women a safe space in which to discuss their struggle – at least with each other.

There are also cultural expectations of women to be fulfilled. Patel, for example, got divorced from her husband during her treatment – due to her being unable to fulfil expectations of ‘how a wife should be’. Consequently, many are worried that seeking treatment will result in abandonment or divorce.

Perverse sexism and monetary value are also factors in many communities. Pooja Saini, a lead researcher at the NHS, who researches health inequalities, says, "if they [men and elders in the wider community] didn't think women should go for screening, then they didn't go."

Especially in developing countries, a woman’s health is given the least importance – as it is believed that priority must be given to children and husbands for their economic value to the household. The high cost of treatment therefore further disadvantages these women.

Women would rather suffer in silence

In these situations, some women choose to reject treatment despite access. Saini says, "some women went to the extent of not even having treatment because, if they went, people would know as they'd lose their hair." Others choose not to go because they are afraid “it might affect their children because no-one would want to marry them,” she adds.

Madhu Agarwal, a cancer support manager relates that one woman had come in for treatment so late that her breast was “fungating” and “rotten”. "It was smelling so bad that you couldn't even sit next to it," she explains. Unfortunately, the woman who had young children, died from the disease.

In other instances, women choose to go for treatment but suffer the pain in silence. For example, Patel has kept her treatment a secret, saying she felt “extremely lonely” during chemotherapy. “I had some very dark days," she elaborates.

As for 63-year-old Deviben Patel, she wore a wig “and kept it a secret for a year.” For Samina Hussain, one of her family members told her to wear a hijab to hide her hair loss from chemotherapy.

Cultural sensitivity needs to be part of a doctor’s attitude

If doctors treat patients with cultural sensitivity, it could help put patients at rest during appointments. This also encourage patients to go forward for screening and treatment. As Dr Rita Ghatak, Head of Stanford’s Aging Adult Services/Geriatric Health Program, details, her mother-in-law had breast cancer – and during her mastectomy, she was treated with great cultural sensitivity and comforted by the extraordinary care she’s received.

Dr Ghatak provides much needed navigation to South Asian women regarding the management of their disease and believes there is a need for the continuity of care. The complex network of doctors, specialists, clinics and examiners, surmounts to little efficiency and emotional cohesion. Therefore, when continuity of care lapses, patients without support may drop out.

It may also be beneficial for doctors to explore the possibility of involving social groups into the healing process – just like how it is done in Japan, for instance. Some doctors in Japan, at the behest of the patient’s family, do not tell the patient their prognosis directly – especially if it is terminal, as the stress can sometimes be too much to endure. MIMS

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