LIFESTYLE
08/12/2019 3:47 PM IST

'Very Much A Taboo Subject': Asian Cancer Survivors On Dealing With Stigma After Diagnosis

“Too many people in the Asian community still fear the worst when they hear ‘cancer’."

HuffPost UK

Dealing with a sudden cancer diagnosis is a shock for anyone and is often accompanied by a whirlwind of emotions. Some people aren’t only dealing with the physical and mental repercussions of their diagnosis, but cultural barriers and stigma, too – even people not wanting to talk about their disease.

Statistics show there is a significantly lower uptake of cancer screening among the BAME population compared to the white British population in the UK – but also that earlier diagnosis can lead to better outcomes.

Three cancer survivors from the South Asian community have shared their experiences with HuffPost UK to raise awareness, tackle misconceptions and address the assumption that cancer always means you’re going to die. 

‘In the Asian community, people associate cancer with death’

Raveen Sethi

Raveen Sethi legs were so itchy she was struggling to sleep. She’d assumed it was dry skin from the cold weather, but when her symptoms worsened, she went to her GP who told her it was scabies, a skin infestation caused by mites. She was given medication, cream, and advised to get her bedroom fumigated. 

Yet the itching persisted. Sethi became very fatigued and in desperation, her mum took her to see a private dermatologist. “I had found a lump in my neck but didn’t think it was anything to worry about and didn’t want to make a big deal of it so just covered it with scarves,” the 24-year-old trainee financial advisor, who lives in Essex, tells HuffPost UK. “When we saw the dermatologist, she checked for enlarged lymph nodes and hinted it could be cancer.” 

Tests confirmed Sethi had Hodgkin lymphoma, a cancer that develops in the lymphatic system. It was found in her right lung and was diagnosed as Stage 4. She needed chemotherapy and ended it every fortnight for six months. 

“I found cancer was very much a taboo subject,” she says of reaction in her South Asian community when she told people. “They were shocked as they associated cancer with death. I felt like my diagnosis was the elephant in the room and people wanted to talk about it but didn’t know how to.”

Raveen Sethi

“Cancer does not naturally mean death.” she says. “But within the Asian community, many people would prefer to ignore it and bury their heads in the sand. They didn’t understand there are so many different cancers and different survival rates and that as I was younger, I would take better to treatment.”

Sethi found it hurtful people commenting on her weight loss and body shape as she went through chemo. Some would hug her harder and longer, which she says was nice in a way, but as though they were thinking: “You are alive!” 

She also faced the dilemma of whether to freeze her eggs before her treatment. Although she has nephews and nieces who she adores, at 23, Sethi had not thought about having children herself. It felt like a momentous decision. “People can be very insensitive and say things like: ‘Why do you not have a baby?’ or ‘When are you going to have children?’ However, they don’t consider that some people might have health issues and be having problems conceiving or simply not want children which is totally OK.”

Ultimately, Sethi decided not to have her eggs frozen – it would have meant delaying her treatment – and opted to have an injection every month instead to protect her ovaries. As her chemotherapy was less aggressive than some treatments, there was a lower chance of her fertility being affected.

Through all this, Sethi says the support she received from her close family was incredible. “Every fortnight, they would be in the chemo room with me – all five of us. People don’t always get that kind of support. A friend of my dad’s had to get a bus for her cancer treatment and that must have been really tough.”

She was living at home, so spared the financial necessity of returning to work, though she choose to work through her treatment anyway. Particular moments stay with her: “When I was losing my hair which was a big thing for me, my sister would brush it for me. As it was falling out in clumps, to save me seeing it and getting upset, she would put it in her pockets.”

Having finished her treatment in September 2018, Sethi is now in remission. She still worries about a relapse – “people like to think it is in the past and don’t want to talk about it” – but she hopes speaking up will show other people they are now alone. “I have been surprised and pleased to have other people from the Asian community get in touch to share their own cancer experiences.”

 

‘As an Asian man, I felt I had to be strong and stoic’

Amuz Sandhu

Amuz Sandhu was living a healthy and clean lifestyle when he first noticed blood in his urine and told himself it couldn’t be anything serious. “I had symptoms for a while,” Sandhu, 33, a father of three who lives in Birmingham, admits to HuffPost UK. “But I was performing at a high level as a Thai boxer and thought everything was fine with my health. Being young and with the lifestyle I lived, it did not make any sense for it to be anything to worry about.”

The blood in his urine would only last for a day or two, so by the time he went to see a GP – at the insistence of his former partner – he could not find anything. This continued on and off for four years. Then suddenly the situation escalated. 

“My symptoms became massively worse and were happening daily instead of every few weeks like before. At first, I thought I’d injured something internally.”

When Sandhu went back to his GP, he was asked about weight loss. Despite the fact he wasn’t training at the time, was lean and eating well, he had dropped a couple of kilos. He had an ultrasound and endoscopy which showed a tumour and surgery a few weeks later confirmed he had bladder cancer

This was March 2016. Sandhu had one session of chemo and has been to six-monthly check-ups ever since. He began training just a month after his surgery and by October, he was part of the national team which won a gold medal.

Through all this, he chose to hide his diagnosis from all but a few people. “There is still a feeling that cancer means the worst-case scenario,” he says now, “so I thought what was the point of telling people and worrying them.”

Amuz Sandhu

The impact of his cancer diagnosis had hit Sandhu particularly hard because when he was just seven, his mum had been diagnosed with throat cancer. He remembers her being very poorly and, as a child, having to grow up quickly. 

“My dad left and since then, the ‘man of the house’ pressure was on me from a young age. Within the Asian community, men are expected to be very strong, stoic and not show emotion.” he says.  “I didn’t really bother to think about how I felt at the time of my diagnosis. I was more in denial and worried about how it would affect everyone else.”

Sandhu told only his then partner, brother and a couple of close friends. “When I eventually told my mum, she freaked out and overreacted. Her reaction was through love and worry, but it made me glad I hadn’t told her earlier.”

However, bottling up his feelings during his ordeal meant the aftermath of having cancer hit him hard, Sandhu says, and he took to drinking heavily. 

He says: “I think the Asian community heavily under-estimates the toll cancer takes on people mentally and emotionally. They think that once the medical side of things are done, it’s all in the past. But that’s definitely not the case. After going through the whole thing alone and trying to protect everyone else, I was hit with the realisation that the cancer had come out of nowhere and I felt weak and vulnerable when I was supposed to be strong. But I still would not talk.”  

It was ending up as a contestant on Channel 4’s SAS: Who Dares Wins that finally made him acknowledge his drinking problem and self-destructive attitude, says Sandhu, who credits the show as a “massive turning point”.

“I realised I need to talk about and come to terms with what I had been through,” he says, and hopes the wider community can start to talk, too.

Amuz Sandhu
Amuz Sandhu on Channel 4’s SAS: Who Dares Wins

‘Assuming the worst is a huge cultural issue’

When Dr Daksha Trivedi was diagnosed with cancer of the lower oesophagus, it felt like lightning had struck twice.

“We were in shock and disbelief as only six months previously, my twin brother had died of advanced stomach cancer. It was later discovered that his primary cancer was cancer of the lower oesophagus,” she tells HuffPost UK.

Symptoms of cancer of the oesophagus can include reflux, heartburn and difficulty swallowing, but Trivedi – a senior research fellow in public health – had experienced none of these. She had been suffering from IBS type symptoms and her GP, referring her for a colonoscopy, decided she should have an endoscopy too – a decision that Trivedi believes led to her being alive today.

Dr Daksha Trivedi
Dr Daksha Trivedi

While Trivedi went in to see the consultant with her husband, they left her 88-year-old mother waiting outside. Daksha remembers feeling utter shock and disbelief at her diagnosis, and immediately wanting to protect her mother. 

“My mum had already lost two children as I also had an older brother who died 22 years ago of a heart attack at the age of 45,” she says. “When we came out, I went to see a Macmillan nurse and my mum was crying and pleading and saying she was telling God she had her fair share of tragedy. We did not want to lie to her but we decided not to shock her with the actual news.”

The worst thing was the uncertainty. “It was very difficult for me to tell my mum when I felt so uncertain myself. I told her I had an unusual polyps and needed further tests and scans. Then we gradually told her without using the actual cancer word.” And when it came to surgery, Trivedi’s mum went into denial: “She wanted everyone to send me best wishes instead of assuming the worst.”

A lack of information and awareness in the community is at the root of this, says Trivedi. “Many South Asian families have preconceived ideas about cancer that come from stories within their own communities. If one person has had a poor prognosis from cancer, it is assumed that any other person diagnosed with cancer will follow the same path. These assumptions are often made without adequate knowledge or information about treatment options and prognosis.”

Trivedi says her family history of cancer affected her during her diagnosis and believes health professionals could offer greater support to people from different cultural backgrounds. “In my experience, the focus was more on treatment than support required for the family. Finding ways of engaging with people from different cultures, who may process information in different ways is important.”

A cancer professional responds:  

Salma Hashmi, who works for Macmillan Cancer Support in Manchester, says that some people from BAME communities, particularly from a South Asian background, tell her cancer is still treated as taboo. “People in the BAME community are often very aware of things like diabetes, heart disease and stroke, but sometimes, cancer is not that well known. Fear of the unknown and thinking they can’t talk about it leads to isolation,” she says. 

There is still a misconception about cancer being a death sentence and feelings of shame can make it difficult for some people to open up about a diagnosis. “Cancer is such an individual thing and people deal with it in different ways,” says Hashmi.

Whether people decide to talk about it with their families or not, she adds, they need emotional, medical and practical support. “Talking can help people as we can talk about the uncertainty and help them find solutions to problems and make important decisions about their future.”

Macmillan provides A to Z symptoms cards in different languages including Urdu, Punjabi, Bengali, Arabic and Gujarati. A free Macmillan support line is available in 200 languages, as well as an interpreter service and local support centres.

Visit www.macmillan.org.uk or call free on 0808 808 00 00 seven days a week from 8am to 8pm.