This, unfortunately, is a reality for many cancer patients around the world, Claire Neal from the Livestrong Foundation told the audience at the 17th Reach To Recovery International Breast Cancer Support Conference currently underway in Cape Town.

‘€œGetting a cancer diagnosis is hard enough, a person shouldn’€™t have to deal with stigma on top of that,’€ said Neal.

The Livestrong Foundation did an audit of the media coverage of cancer in 10 countries around the world and came up with some concerning results: in all the countries reviewed, a cancer diagnosis was commonly associated with death; that stigma around cancer resulted in silence about the issue and patients not speaking about their conditions or looking for support; but on the positive side there was a true recognition of the power of cancer survivors.

Stigma even affected the language the media used to portray the disease. In Italy, for example, they found that the word ‘€œcancer’€ wasn’€™t commonly being used and that the media there referred to it as ‘€œtumour’€ instead. ‘€œThe word ‘€˜cancer’€™ has become so stigmatised that the advocacy community and the media was starting to use more neutral words to talk about it more easily,’€ said Neal.

As a result of surveying public perceptions, the Livestong team realised that a lack of information and education on cancer has led to some dangerous misconceptions and myths. ‘€œIn Russia many parents thought that cancer in children was incurable and therefore didn’€™t take their children for treatment, in China many thought that people with cancer brought it on themselves, and in France the media was repeatedly referring to cancer as a taboo,’€ said Neal.

‘€œHere is South Africa we saw stories highlighting the increase in survival rates, so there are reasons for hope as well.’€

Neal went on to explain the extent of the stigma cancer patients often have to endure. She identified three different categories:

1.             Self stigma where the person with cancer personally feels shame or guilt around their diagnosis.

2.             Perceived stigma where the person perceives that others are negatively judging them based on their cancer diagnosis.

3.             Active stigma, for example a husband that leaves the wife because of the stigma around cancer, or an employer who fires an employee because they think a cancer survivor is in constant pain and can’€™t continue to work, or neighbours who isolate a person in their community because they are afraid of catching cancer and don’€™t want that influence in their community.        

According to Neal, there are beliefs that if you talk about cancer you are ‘€œopening the door allowing it into yourself or your family’€. This creates a culture of silence which is difficult to break because it is more difficult educating people because no one wants to talk about it. ‘€œIt also creates this blaming where they think that people with cancer are to blame for their cancer,’€ said Neal.

More alarming was that stigma was also having an impact on access to care. ‘€œEven when there were great support services stigma was keeping people away from getting the care they need.’€

The fear of result is one of the major reasons people don’€™t get screened. Their research showed that 42 percent of people said that fear of result was the reason for not getting screened. This, in turn, leads to late diagnosis ‘€“ in developing countries over 80 percent of cases are presenting a stage where it is incurable.

‘€œIt creates a self-fulfilling cycle because people wait to get diagnosed, and we have people tell us over and over again: ‘€˜If I have cancer, it is not treatable ‘€“ so why would I want to know early? I’€™d rather be happy and go as long as I can before I know’€™. So they don’€™t go for treatment, and they die, and then people in their communities think that cancer can’€™t be treated,’€ she said.

In order to break the silence and address some of these misconceptions around cancer, the Livestrong Foundation has rolled out an anti-stigma initiative in South Africa and Mexico. These were the pilot projects, and the initiative will also be implemented in other countries.