Death by stigma: the cancer myths that kill Asians

This trend has been found among Asian immigrants in the United States. The Cancer Prevention Institute of California found that incidence rates of breast cancer " the most common form of the disease, affecting 2.1 million women globally each year " in all Asian-American ethnic groups increased between 1988 and 2013.

In Canada, a study by Women's College Hospital and the Institute for Clinical Evaluative Services (ICES) found Asian minority groups were less likely to be screened for breast cancer compared to the general population. Researchers put this down to language barriers, cultural stigmas and limited support networks, problems also faced by Asian immigrants, both male and female, suffering from other cancers and life-threatening illnesses.

Cannas Kwok

British-Pakistani Nabila Farooq, 52, a Macmillan Community Development Officer who supports people affected by cancer in Manchester, has come across Southeast Asian women who choose not to tell their in-laws that they have breast cancer. A breast cancer survivor herself, Farooq said this decision could stem from various reasons such as fear of hereditary breast cancer affecting their daughters' marriage prospects or the belief that cancer is a trial from god.

One myth is the association of breast cancer with immoral behaviour, said Kwok: "Some women believe they will not get breast cancer if they are loyal to their husband. To a health care professional this is nonsense but this mindset still impacts women's screening behaviour."

Judi Mark, 62, who moved with her family from Hong Kong to Canada as a child, recalled that the language barrier was a major hurdle for her parents. Her family lived in Montreal, where French is the predominant language, so when her late father had liver cancer, he struggled to communicate with doctors at the public hospital.

Nabila Farooq

Four other family members " her two sisters, elder brother and his eldest son " also died of cancer and when they were alive, the family battled the myth that the illness was contagious.

"All but one of my sister's Chinese friends avoided visiting her because cancer was known as a disease that you could catch due to bad luck or being jinxed. They honestly believed both the cancer and bad luck could be transmitted," Mark said. "We as a family were heartbroken. We couldn't explain away the stigma and my sister went into deep depression."

Because of cultural beliefs or taboos attached to cancer, most Asians prefer to keep the illness secret or private within the family. Some patients worry that they will become ostracised once others know about their diagnosis.

Vietnamese-Canadian Jenny Truong, 24, whose 86-year-old grandfather was diagnosed with prostate cancer, said the term 'cancer' was "rarely mentioned by anyone in the household. I felt as if we are not allowed to discuss cancer and there is nothing we can do about it".

"Among older Asians, there still exist cultural beliefs that cancer is a death sentence. There is a lack of knowledge that with early detection and treatment that more and more people are surviving cancer," said Grace Yoo, professor of Asian Studies at San Francisco State University.

WaiLo Lee surprises her mother with a trip to Worcestershire, UK.

Inspired by the US talk show host Ellen DeGeneres, WaiLo created a series of reunions and sightseeing tours she termed #SuperSurprises for her mother.

The first surprise came after her mother's diagnosis last year " a reunion with "Auntie" Ling, whom Elly had met four decades ago when they were working as factory girls in Hong Kong. WaiLo contacted Ling's son, Kenson, who lives in California. He sacrificed his air miles for his mother to travel from Oakland to visit Elly in Worcestershire, near Birmingham in Britain. In a video shot by WaiLo, a surprised Elly touches Ling's cheeks and asks "Are you real or not?" before later embracing her friend.

WaiLo said she shared this story to raise awareness of breast cancer and highlight how it affects minority communities. She hopes this will change how East Asians in particular talk about cancer.

"Chinese have a traditional, stoic, conservative culture and a 'don't air dirty laundry in public' stance. This makes it rare for people to share their difficult experiences," WaiLo said.

"It is only through sharing, learning, understanding and accepting that we can be better at dealing with common illnesses that can affect everyone."

WaiLo plans to keep creating surprises, including more friend and family reunions, and has even reached out to Hong Kong tycoon Li Ka-shing for help with tracing her family's Shantou roots.

Minority families also deal with what WaiLo describes as multiple complexities when illness strikes, including financial issues and grappling with limited support networks in their adopted homes.

"Representation matters, so minorities talking about these difficult things will have a ripple effect " I can only hope other overseas Asian communities will see this and that it will be helpful for them," she said.

"Cancer can't be all about doom and gloom. If we want to make positive change ... we need cancer to be a human thing to talk about."

WaiLo's mother gets another surprise trip, this time to the Greek island of Santorini.

Cancer support groups such as the US-based Joylife Club and UK-based Asian Breast Cancer Support Group have been established to assist overseas Asian cancer patients, survivors and carers through the treatment and recovery process.

As a coordinator for Asian Breast Cancer Support Group, Farooq has chaired a patient-to-patient support initiative to emotionally and psychologically support women affected by breast cancer.

"Early diagnosis saves lives. People need to be aware of cancer and its signs and symptoms, to be able to talk about the subject openly without feeling afraid of the stigma surrounding it," she said.

Stephen Cheung and his wife, Christina, a breast cancer survivor, immigrated to the US in 1988 with their children. They co-founded the Joylife Club in 2009 because of Christina's first-hand experience of how Asians were being neglected. So far, the group has helped more than 300 Chinese cancer survivors and patients in California's San Mateo county through peer support, educational seminars and social activities.

Winnie Lai, 65, joined Joylife Club after she was diagnosed with breast cancer in 2011.

It was difficult for her to accept that she had cancer: "I kept asking myself 'why me?' I had no family history of breast cancer, I am a registered nurse who takes care of patients with different kinds of cancer. I never thought it would happen to me."

Lai said she felt good once she started going to meetings and now continues to attend so she can support the group's newcomers.

"I love the support group because we are free to talk about anything, it helps all cancer patients."

But for Kwok the memories of her mother's suffering have resurfaced, as her 60-year-old sister who lives in Hong Kong recently had a breast cancer scare. "This brought back all the suffering my mum and my family experienced during her battle," she said. "What I want to point out is people's beliefs about cancer haven't changed at all.

"Despite advancements in medical treatment and higher survival rates, cancer is still seen as a death sentence. It symbolises suffering even for a health care professional like myself."

This article originally appeared on the South China Morning Post (SCMP).

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