These Women Are Closing The Breast Cancer Awareness Gap In Culturally Diverse Communities

Breast cancer is the most common type of cancer in the UK, Australia and America. Approximately eight out of ten breast cancer cases occur in women over 50, and while mammographic screening is effective in early detection in this age bracket, that's not the case for women under 40. Yet, breast cancer is estimated to be the most commonly diagnosed cancer for women aged 20-39, highlighting the importance for young women to be just as aware of how their breasts look and feel, and to get checked by a doctor if something doesn't seem right.

While more of us are speaking openly about checking our breasts and encouraging older generations to do the same, research shows that breast screening participation rates from culturally and linguistically diverse (CALD) communities have consistently been lower.

Western Sydney University academic Dr Cannas Kwok has been researching migrant women's attitudes and beliefs about breast cancer since 2005, after losing her own mum to the disease years ago in Hong Kong.

She said that language barriers, cultural stigmas around breasts and conservative beliefs are some of the key reasons why CALD women talk about and do less when it comes to breast cancer.

Dr Kwok explained that some women in certain East Asian and South Asian communities harbour religious and moral beliefs that they're "immune to breast cancer, so they don't believe that will happen to them."

"Some believe having breast cancer is God's will," she told Refinery29 Australia. "So if they believe in God, and if they are loyal to God, they will not see the need for screening."

Others believe that breast cancer is connected to a woman's sexuality and loyalty to her husband.

"[They believe] if they are loyal to their husband and only have one man in their life, they will not get breast cancer," Dr Kwok explained of this ideology. "So in that sense, going for a screening implies being guilty of immoral behaviours."

Dr Kwok said one of the most common approaches to culturally sensitive interventions in the health system is the production of informational pamphlets translated into various languages. But she says the strategy needs to go beyond this, taking cultural beliefs into account and therefore phrasing and presenting information in a culturally appropriate way.

"For example, I conduct culturally sensitive breast cancer prevention education for the Chinese community," said Dr Kwok. "We do not use the name 'Cancer Prevention', rather we shift the focus and name it 'Promoting Women's Health'.

"And then in that talk, I mention that breasts are just like any other part of your body. When you have acne on your face, you see it and then you address it and get treatment. It's the same for your breasts. You are very familiar with your breasts yourself and that early detection can save lives."

Dr Kwok commended the work of CanRevive, a NSW-based organisation founded by three Chinese women — two cancer survivors and one carer — that facilitates support sessions for Chinese-speaking people through their cancer journey.

Another initiative in NSW is the Pink Sari Project, aimed at encouraging greater breast screening rates amongst Indian and Sri Lankan women. Initially led by the NSW Multicultural Health Communication Service in 2014, the project was meant to increase screening rates by 5% within the first two years, but managed to achieve a 17% boost.

Since then, the organisation has been run by a group of female volunteers within the South Asian community, who have continued to successfully help increase screening rates by providing tailored, culturally sensitive information about breast cancer and support to diagnosed women and their families.

"Our aim is to improve the health and wellbeing of South Asian communities," said Shantha Vishwanathan, President of Pink Sari Inc.

"What our vision is, is to provide these communities with information and support to improve knowledge and the ability to lessen the impact of certain types of cancer."

Vishwanathan said the organisation viewed itself as "a two-way link between the community and the mainstream service providers".

"We work together to improve the services so they're more culturally appropriate," she explained.

Through fashion shows, hosting online forums and wearing pink saris to test cricket matches, the organisation also prioritises its function as a support network to South Asian women who can often feel alone when cancer is considered a taboo topic.

Indian woman Sheila Kumar was diagnosed with stage 2B breast cancer in 2019 after finding a lump on the left side of her breast. Based in Brisbane, she hadn't heard about NSW's Pink Sari Project, but said that having a similar initiative in Queensland would've definitely helped her grapple with her diagnosis.

Kumar was told by extended family members to keep silent about her condition due to the cultural stigma. "Everyone was telling me, 'stay quiet, don't leave the house'," she said.

"They were telling me to not bring attention to myself basically. And because that's the way I've been brought up, that's how I agreed to things and I didn't even question it."

Kumar eventually decided she would speak up. "I felt, 'Why do I need to hide? I haven't done anything wrong,' she said.

She hoped by being vocal she could help other South Asian women feel confident in checking their own breasts and knowing about cancer risks and early detection.

"That's what made me think, 'You know what, I'm going to do the exact opposite of what my community or my family or everyone believes in'," she revealed.

"I just had it in me to say, 'Look, I'm just going to do it because I'm not going to allow anyone to feel as if I should be ashamed of the disease I had no control over'."

While Kumar was 53 when she was diagnosed and in the typically higher-risk age bracket, fellow South Asian woman, Minoli De Silva was only 29 when she was diagnosed with breast cancer in 2016.

The former MasterChef Australia contestant, who is of Sri Lankan heritage, wants to speak up because it's not just older women, but also younger women in South Asian communities who don't think to check their breasts.

"I think empowering anyone in the South Asian community when they do speak up about it [is important]," said De Silva. "Honestly, I just think this conversation needs to be normalised because what's more important than saving someone that you love?

"Everyone needs to prioritise the awkward conversations about boobs and touching your boobs and testing and checking and reminding others to do the same."

De Silva said having open conversations is the first step when she's asked herself, "How can we encourage everyone in the South Asian community to not treat it like a trivial issue?"

The daughter of immigrants has noticed older Sri Lankan people often believe "what you don't know won't hurt you" when it comes to health issues.

"That attitude is so rampant within the South Asian community," she said. "I see my mum and my dad and I say, 'Hey, let's go get checked or did you go to this appointment?' Generally, they're like, 'Oh yes I'll look at it', and I'm sure that is not uncommon in a lot of families where people just put off going."

Another breast cancer survivor, Thit Tieu has been a community leader in the provision of cancer support and information to Muslim women in Sydney's Illawarra region.

The now-74-year-old started the Sisters’ Cancer Support Group after her own experience in 2013 led her to see that Muslim women need more support through this challenging time.

"After I finished all my treatment, I was told, 'You're okay, there's no more cancer, you're fine'. But I realised that I wasn't fine at all after going through surgery, chemotherapy and radiation," she explained.

"So I tried to educate myself on how to look after myself better. I tried to attend as many programmes that are available for cancer survivors, particularly breast cancer survivors. I found that everywhere I'd go, I'd stick out like a sore thumb because I'm the only multicultural woman there and they don't know how to even treat me or place me."

After raising her concerns with her local council in Wollongong, she was referred to a meeting with Breast Cancer Network Australia, Area Health Service and the Multicultural Community Council.

When she asked these organisations why multicultural women weren't engaging with mainstream cancer support services, she was told, "They have their own community support."

"I said, 'No, that's not right, my community didn't support me' and they said, 'We have translated materials.'"

When the organisations asked Tiet what she wanted to do, she told them, "I want to set up something to support the multicultural woman who are going through cancer, not only breast cancer but cancer in general.'"

That's what led to the launch of the Sisters' Cancer Support Group in 2014.

Along with a committee of six to eight women from various countries of origin (including Burma, Lebanon, Nigeria and Malaysia), Tieu coordinates monthly support sessions that include gentle exercise and an educational component to empower women to better manage their health after cancer treatment. 

"The aim is to provide a lot of education and support, and a space for these women to come that's comfortable, relaxed, and they are prepared to learn."

With some funding from the Cancer Institute, the group works with local mosques and imams to spread the word through the community, and Tiet also invites experts to come in and show women how to check their breasts by demonstrating on a 3D model.

Earlier this year the British Islamic Medical Association launched a new campaign to help Muslim women check their breasts. Called ‘The Bread Exam’, it involves using medically approved movements, demonstrated while kneading dough, to show women how to check their breasts for lumps and early signs of breast cancer.

Tiet said a similar approach in Australia could be beneficial to help combat cultural taboos and stigmas about breasts and intimate body parts. "They [the UK] are far more progressive in working with the multicultural people than in Australia," she said.

Breast cancer is the most commonly diagnosed cancer for Aboriginal and Torres Strait Islander women, yet screening participation rates are only 37.3% compared to 53.2% for non-Indigenous Australians. According to the National Breast Cancer Foundation, First Nations women are more likely to be younger when they are diagnosed and 1.2 times more likely to die from breast cancer.

A lack of information and accessibility issues have contributed to the lower screening rates in First Nations communities.

According to Yorta Yorta Elder, Aunty Pam Pederson, who was diagnosed with breast cancer in 2016, community attitudes towards the health system have also played a part.

The first step for Indigenous women would be to "go to your Aboriginal Health Service," said Aunty Pam. "But we also have a bit of an issue with health services too, because some of our people don't like going to the health service because they don't want people knowing their business."

This makes it "really hard" and Aunty Pam said the next place to look is "groups that would support you".

One is Breast Cancer Network Australia's (BCNA) private online network for Aboriginal and Torres Strait Islander women.

BCNA's CEO Kirsten Pilatti said the online network has been important in connecting First Nations women, but admitted there are improvements to be made.

"One of the things that we're really clear about as an organisation is wanting to provide the support that's required for Aboriginal and Torres Strait Islanders that's right for them," she said. "So our project at the moment is looking at content and not only how we deliver it, but what channel is best for it to be delivered."

According to Pilatti, representation plays a key role in this.

"So when they [First Nations people] come into the network, ultimately what we want to be able to deliver by the end of this year is that they're actually welcomed by an Aboriginal or Torres Strait Islander woman or man, not by a white blonde-headed CEO.

"We know that if they can see themselves in our network, then they will feel more connected and they will understand that we are being led by those people that have walked before them."

BCNA also has a First Peoples advisory group that not only strives to provide tailored and culturally sensitive information to Indigenous women, but also help them feel more comfortable with the health system.

"This means raising awareness for the need for Aboriginal liaison officers to be present when the medical team are discussing treatment options for Aboriginal and Torres Strait Islanders, so that their cultural sensitivities are considered during the treatment decision," said Pilatti.

As an ambassador herself with BCNA, Aunty Pam wants Indigenous women, young and old, to be more aware of their bodies and get checked regularly. Wrapping up the interview, her final message was: "I'd like to shout out to our Aboriginal people to go and have a mammogram. It's really important."