Stigma around cancer prevents patients from getting diagnosed and treated

Talking openly about cancer, like the cancer support group in this filepic, can help remove the stigma surrounding the disease.

One in two people will be diagnosed with cancer in their lifetime.

This, coupled with a growing and ageing population and improved cancer treatments, means that the number of cancer cases and cancer survivors will rise substantially in the years to come.

Every year, efforts are made to raise awareness about cancer prevention and control.

Two important days in the calendar are Feb 4, which is World Cancer Day, and the first Sunday of June, which marks National Cancer Survivors Day in the United States.

World Cancer Day is a special day to raise awareness of cancer and to encourage its prevention, detection and treatment.

It is part of the Paris Charter, adopted by the World Summit Against Cancer for the New Millennium on Feb 4, 2000, and led by the Union for International Cancer Control (UICC).

Meanwhile, National Cancer Survivors Day highlights the aim to “demonstrate that life after a cancer diagnosis can be a reality”.

Cancer-related death rates in US have fallen 27% from its peak in 1991 to 2016, and today, some cancer survivors are surviving more than a decade after their initial diagnosis.

However, according to the second Malaysian National Cancer Registry Report (2012-2016), our country has experienced a rise in both cancer cases (a 11.3% increase from the first report covering the period of 2007 to 2011) and late stage, i.e. stage 3 and 4 cancer, diagnoses (from 58.7% to 63.7%).

Clearly, more work from every sector, covering the full gamut from community cancer prevention to screening, early detection and diagnosis, is needed to battle cancer in Malaysia.

No longer fatal

One of the barriers to cancer screening is living in rural areas, like the Orang Asli community in this filepic.

One important, albeit often neglected, strategy of cancer control, especially in Asia, is the need to reduce cancer stigma.

There is evidence that public awareness events are effective in getting the public to talk about cancer, which is still a taboo subject surrounded by many myths and misconceptions.

Engaging with stories about cancer and how survivors have overcome their condition is useful for us as a society to help normalise this “taboo” subject and to gradually reduce the entrenched stigma attached to it.

It was only a decade or two ago that cancer was solely viewed as a life-threatening condition.

The idea of cancer as a chronic illness was unacceptable then, and indeed, was viewed by many in healthcare as out-of-context and a way of trivialising this “fatal” condition.

However, today, there is clear evidence that some cancers can take the form of a chronic condition.

It’s now time for us to accept this reality.

This basically means that we, as a society, must change our perception of cancer as fatal, as this attitude perpetuates fear, causes unease and creates avoidance of the topic.

A reluctance to speak about one’s cancer diagnosis, treatment and care (due to fear) is counterproductive in addressing the rising number of cancer cases.

It hinders early detection and acts as a barrier for survivors to reintegrate into society.

When we refuse to talk about cancer, it prolongs the prevailing mystery about the condition, thus strengthening the entrenched stigma of cancer.

For example, community cancer care programmes can be delivered cost-effectively within the community to enable people living with cancer to cope with the disease and its psychological, physical and emotional side effects.

This can be particularly crucial for some survivors during their “cleared, but not completely well” transitional period after completing treatment.

Destigmatising cancer will help counteract the fear and unease around this topic, which can lead to avoidance of such available support.

Avoiding the issue

So, what exactly is cancer stigma?

Stigma, in general, is defined as a socially-constructed phenomenon that occurs when members of a group experience loss of status or discrimination on the basis of certain shared characteristics that are deemed undesirable by the dominant group.

Stigma occurs through a variety of situations where the negative attitudes and beliefs are acted out via:

• The person himself or herself (self-stigma)



• Overt discrimination by members of the public (experienced or enacted stigma), and/or



• Fear of such discrimination (felt stigma).

All this contributes to a reluctance to talk about cancer, particularly when it might relate to one’s self or loved ones.

This hinders people from going for screening, which can lead to early detection, diagnosis and treatment.

One way of overcoming the stigma of cancer is through the strategy of early diagnosis.

Cancer prevention talks and free screening for members of the public who have no symptoms and have not been screened before, can help promote awareness of cancer prevention.

Being diagnosed during the early stages of cancer means a better prognosis and higher chances of a cure.

Having screening campaigns at the community level (and away from the dreaded hospital-based environment), with healthy lifestyle activities incorporated into the programme allows for easy, friendly engagement with members of the public.

Such a strategy can help reduce the prevailing fear and myths about the disease, and address the stigma of a cancer diagnosis.

Sharing positive stories of those who were diagnosed early, with good outcomes, also helps to spread the fact that not all cancer cases are doom and gloom.

Such success stories from both cancer survivors and patients helps boost the profile of cancer survivorship.

Barriers to screening

When it comes to community screening campaigns, they are not without their limitations.

Stigma prevents people from being screened and tested for cancer, resulting in late diagnoses and lower chances of successful treatment. — Filepic

It takes a lot of effort to organise such initiatives, especially so when they are conducted during the weekends when the public have more time to participate.

Financial support and manpower shortage are perennial problems for organisers.

Studies have consistently identified barriers to cancer screening as the following:

• Lack of time



• Procrastination



• Forgetfulness



• Other priorities



• Ambivalence towards screening



• Devaluing screening tests



• Low perception of risk



• Lack of understanding



• Language difficulties



• Low socioeconomic status



• Living in rural locations



• Fear of results



• Marital status (single)



• Gender (male)



• Cultural myths and unhelpful beliefs



• Stigma

For example, we once interviewed a group of elderly community exercisers who attended a weekend cancer prevention event on why they didn’t take the opportunity to be screened.

A common comment was that “it’s best not to know if one has cancer” and that if cancer does strike them, they will “deal with it then”.

It is important to note that although many cancers are treatable, and even curable, the outcome is invariably better if the cancer is detected early.

Some people are also turned off by the screening process, e.g. disgust at handling their own faecal samples for colon cancer screening.

For example, in Australia, eligible citizens aged between 50 to 74 receive a free home bowel cancer screening test kit through the mail under the National Bowel Cancer Screening Programme.

However, only around two in five people do the test and send it to be analysed.

This rate is consistent with international experience in other similar programmes.

While in Malaysia, we do not have a similar programme due to various reasons (e.g. finance, weather, logistics, low literacy level and prevailing stigma), many screening programmes are available at both public and private hospitals, clinics and laboratories.

Breaking the silence

In the decades of our research and encounters with cancer survivors, we recognise that there are strong feelings about cancer, which is very often viewed as an uncomfortable and distressing subject.

More work is needed to gradually break the silence around cancer.

Aside from social media and online platforms, as well as the media, ways to transfigure the fear of cancer is needed at the community level.

Helping cancer survivors and their families and caregivers to adjust back to their daily routine of living as part of cancer awareness and stigma reduction programmes, with the support of the community, is one such way.

Such community care and support programmes help facilitate new norms mentally, physically and socially, thus helping to decrease stigma around the disease.

Destigmatising and desensitising issues of cancer in society, together with an increasing focus on offering therapeutic (physical, occupational, social and preventive) interventions in the community can bring forth hope and comfort.

Such supportive preventive care is needed to bridge the fear and dread of cancer.

With its ever-expanding presence in our society today, there is much to benefit from removing cancer’s ability to scare and isolate us.

Associate Professor Dr Loh Siew Yim is a lecturer at the Department of Rehabilitation in Universiti Malaya’s Faculty of Medicine, a UICC Fellow and founder of the KeepAble Cancer Community organisation. For more information, email [e-mail]. The information provided is for educational purposes only and should not be considered as medical advice. The Star does not give any warranty on accuracy, completeness, functionality, usefulness or other assurances as to the content appearing in this column. The Star disclaims all responsibility for any losses, damage to property or personal injury suffered directly or indirectly from reliance on such information.

*KeepAble is looking for post-treatment cancer survivors in the Klang Valley to participate in an eight-week physical intervention trial, which involves learning about core muscle strengthening, during the current conditional movement control order period. Those interested can email Assoc Prof Loh at [e-mail].