World Cancer Day: Why is the disease still a taboo?

Many cancer patients are conflicted over who to share their diagnoses with

January 2016 will be remembered as a particularly alarming month for fans of David Bowie, Alan Rickman, and Terry Wogan – whose lives were all ended by cancer.

Their deaths were not only marked by mass outpourings of grief from loved ones, colleagues and fans at the loss of great talents in their respective fields, but also for the privacy in which they dealt with the disease.

None of the men announced their diagnoses with cancer publicly, but also appeared to have told only their closest friends and family members.

Similarly, after announcing he had throat cancer, actor Michael Douglas later clarified that he had hidden his potentially disfiguring tongue cancer diagnoses at the recommendation of his doctors. 

But while fame and the responses of the media may play a part in whether high-profile figures reveal their conditions, concerns about sharing the unwelcome news are universal.

At a time when the internet enables us to be more open about our lives than ever before, why do people continue to be secretive about their cancer diagnosis when the latest figures show that over 346,000 people get cancer each year in the UK.

Rightly or wrongly, cancer is still equated with death despite increasing survival rates, explains Jacqui Graves, the head of health and social care at the cancer charity Macmillan. 

“I think that cancer is still taboo for certain parts of society. I think people in Britain are private and as a society people talk less about death and dying despite it being the only certainty in life,” she says.

Cancer which attacks intimate parts of the body can heighten the fear of how people will react. 

Samia al-Qadhi, the chief executive of the Breast Cancer Care charity, highlights that some ethnic minority groups regard breast cancer as a taboo.

“We are working in these communities to raise awareness of signs and symptoms, as early detection is vital in providing more effective treatment and, ultimately, saving lives,” she says. 

Angela Culhane, Chief Executive of Prostate Cancer UK, says: "Not everyone affected by this male-specific disease will be comfortable to talk about it, given that it can lead to impacts on continence and sexual function."

And while most people will have had some experience with cancer – either by being diagnosed or seeing a loved one deal with the condition – the disease affects bodies in a highly personal way as there are more than 100 different types, says Ms Graves. 

“The disease will manifest differently in different bodies and each person may have other illnesses running alongside cancer, for example they may have diabetes and cancer or heart failure and cancer, so it’s highly individualised.”

This naturally also applies to how each person copes with cancer, Ms Graves goes on and stresses and there is no “correct” way to deal with the disease and no shame or harm in hiding a diagnosis.

“There’s no right or wrong way to deal with a cancer diagnosis. Each person needs to find their own way of coping. For some it will be sharing it with everyone and for others it will be about keeping up appearances.”

“From talking to women on our helpline, we know that everyone deals with a cancer diagnosis and treatment differently,” says Ms Al-Qadhi. “Some are open, whereas others prefer to be more private and only tell a few people - it very much depends on what’s right for them.”

In the past two decades, fundraising campaigns have grown in popularity and have helped to combat the stigma and fear surrounding cancer, and have made people less afraid to be open about the harsh realities of dealing with the condition. 

“Awareness of prostate cancer has grown thanks in part to high profile campaigns like Men United and Movember. We can see that more men are now being diagnosed at an earlier stage, when the cancer is easier to treat,” says Ms Culhane. 

Ms Al-Qadhi says that such projects have also had a positive effect on attitudes towards breast cancer: "Thanks to high profile awareness campaigns, such as Breast Cancer Awareness Month which we brought to the UK in 1995, breast cancer is talked about much more openly than it used to be."

Patients have also harnessed social media as a way to draw attention to the condition and to raise money – most notably 19-year-old Stephen Sutton who raised almost £5million for the Teenage Cancer Trust before he died in 2014.

But are brightly-coloured and sometimes adrenaline-fuelled fundraising campaigns and social media drives simply a new source of anxiety for cancer patients who may feel pressured to join in when they would prefer to simply hide away?

Ms Graves disagrees. 

“I don’t really think there’s any expectation to do anything when a person has been diagnosed with cancer other than to cope with it in their own way - and they have to find their own way.” 

The definition of sharing can also vary from person to person, says Ms Graves, as some will tell their immediate family while a minority will keep it entirely to themselves. 

She encourages patients who are finding it difficult to decide who to tell to talk to their healthcare team or the Macmillan support line staffed by trained nurses. Such people can help a person consider why they might be afraid of revealing their condition and to consider the outcomes of doing so.

And all the while that cancer is thought of as terminal despite the statistics, attitudes towards death must be changed, argues Ms Graves. 

Describing the reassurance she felt when she viewed her grandmother’s dead body as a teenager, Ms Graves says she had looked “happy and at peace” after being in a lot of pain.

“At 18-years-old I’d never seen someone dead. I was really glad I did as I understood that death doesn’t have to be macabre or bloody or gory. Tt actually can be very beautiful and peaceful.”

Teaching children about death at school, encouraging people to talk about the phenomenon and plan their wishes for when they pass with loved ones can all help normalise death, she says. 

In turn those diagnosed with potentially terminal illnesses such as cancer may feel more comfortable about discussing their condition.

“We should talk about death on a spectrum and as part of living rather than a gradual downfall. So getting old is part of living, starting to no longer be able to do the things you’ve always wanted or could do is part of living.

"We need to include death in the conversation about life and living, so it’s not about life and living and death and dying - but it’s about life and living and death as a part of that."

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