Cancer is a disease surrounded by myths. The fear of getting cancer is common across all social groups. Myths and misinformation can lead to disastrous consequences when people wait too long to get screened and learn their diagnosis only at an advanced stage, facing a shortened healthy lifespan and an early death. Therefore, screening for prevention and early diagnosis of cancer should become a routine practice, according to participants of the roundtable 'From Carcinophobia to Oncology Awareness' held by the HSE Project Team 'Oncology and agency deficits: Russians' autonomous self-care practices in the context of a crisis in biomedicine'.
Despite the wide availability of information, cancer remains a disease which is much talked about, but relatively little known by the lay public, often due to poor health literacy. Data from the European Health Literacy Survey shows that nearly half the Europeans surveyed have inadequate or problematic health literacy. Indeed, poor health literacy is widely pervasive and not limited to less educated or disadvantaged groups such as migrants.
No such surveys have been held in Russia, but the roundtable moderator Sergei Startsev quoted Minister of Health Mikhail Murashko who estimates the level of health literacy in Russia to be around 15%-20%.
The roots of the problem may lie in the school education system, according to the author of the book The Crooked Mirror of Life: Main Myths about Cancer, and What Science Says about Them, Maria Kondratova, PhD. She explains that although the secondary school biology curriculum in Russia is based on solid science, it has little relevance for students' everyday lives. 'It so happens that a typical school biology course in Russia is a simplified and shortened version of the courses taught at university departments of biology. Topics related to human physiology are barely covered in school'. As a consequence, Kondratova argues, students acquire a large amount of theoretical knowledge, but few come out of school with an adequate understanding of the difference between viruses and bacteria, how the human body works, and the causes of common diseases, including cancer.
Another factor contributing to the problem of health illiteracy, according to Kondratova, is the traditionally poor doctor-patient communication in Russia. 'Doctors just tell patients what to do without explaining things. Even worse, a while ago there used to be the terrible practice of not telling a patient that they had cancer. A doctor would tell the family and refer the patient for tests and exams, but the patient could only guess what the problem really was'. Kondratova notes that today, thankfully, there is much more space for doctor-patient communication.
Dr. Maksim Kotov, oncologist at the Petrov National Medical Research Centre of Oncology, agrees that 'the trend towards patient autonomy is getting better', but countrywide, more education is still needed. 'I practice at a federal cancer centre; we receive patients coming from all parts of Russia, from Kaliningrad to Kamchatka. When asking a new patient what they know about their situation, I find that in about 80% of cases, no one has ever explained anything to the patient'. Even though patients are told about their cancer diagnosis, doctors rarely discuss treatment strategies and options with the patient.
It would seem that having access to all the knowledge in the world via their smartphones, people today should not have problems with accessing health information. But this is not necessarily the case. 'People do have problems with assessing the reliability of information; they sometimes lack the critical thinking skills to deal with messages bombarding them from all sides. Many people simply don’t have the tools to make sense of what they read', according to Polina Poleshchuk, author of the BezShapki health podcast and correspondent of the Cuprum Media Project.
Not only is it often difficult to assess the available information, but some patients feel 'chained in shame' about their bodies. Poleshchuk argues that this important aspect should be a topic for research. 'Cases have been reported of women and men with genital cancers who postponed a visit to the doctor for years – or perhaps they made one initial appointment and never followed it up, largely because they found it too embarrassing to discuss the topic'.
The fear of getting cancer is widespread and, just like health literacy, has little to do with how advanced a country's healthcare system is. A cancer diagnosis remains a lethal threat even in countries with a high standard of living.
Carcinophobia is an irrational fear of developing a malignant neoplasm. It is classified as an anxiety disorder.
According to survey data published by the Khabensky Foundation, more than 60% of Russians have a fear of cancer. The situation is made even worse by a general confusion as to what causes cancer. Slightly fewer than one-quarter of all Russians believe that cancer can be contagious, and more than one-third deny the possibility of full remission. As an example of irrational fears, residents of an apartment block in Moscow collected signatures to get children with cancer evicted from the flat where the young patients were staying during their treatment, fearing that the children could 'give other residents cancer'.
The reasons why people today fear cancer are complex. 'I would even say there is an element of magical thinking in carcinophobia', Kondratova reflects. 'Someone may have it at the back of their mind that if they avoid going to the doctor and never learn about their diagnosis, the problem might somehow resolve itself'. Kondratova does not associate this mindset with a lack of education, though. 'There are people with a degree in biology and a good knowledge of how tumours develop who nevertheless postpone a doctor's appointment'.
The fear of malignancies is linked to the strongest human fear: death. 'Cancer is closely associated with death – and death, especially when it comes unexpectedly, is extremely frightening. This threat of a sudden death and the perceived lack of control make anxiety soar', explains Vladimir Mikhailov, a volunteer support group facilitator at the Vera Hospice Fund.
Someone having a generally high level of anxiety is even more prone to carcinophobia. 'Anything can become a vessel for anxiety to catch on to, and cancer is a strong trigger', according to Mikhailov. It is vital therefore to address the deeper causes of anxiety rather than just its symptoms.
Social scientist and senior research fellow at the HSE Laboratory for Studies in Economic Sociology, Elena Berdysheva, shared her perspective on broader attitudes towards death in the Western world, including Russia. 'European societies are sometimes described as death-denying. But not everyone else in the world is as afraid of death as we are. I would expect to see a different attitude towards cancer and a prevalence of carcinophobia in some other cultures', she notes.
In developed countries, cancer is construed at all levels as a macro-threat. In particular, Berdysheva recalled former US President Obama's final State of the Union address on January 12, 2016, in which he highlighted the new moonshot to cure cancer once and for all as one of his presidency's key achievements.
As long as fears are socially controlled and culturally reinforced, carcinophobia can be understood and addressed via cultural codes among other things, according to Daria Asaturian, Research Assistant at the Laboratory for Studies in Economic Sociology. 'Understanding what exactly we are afraid of can make it easier to take targeted action'.
Cognitive bias is an important factor contributing to our fear of cancer. “Each cancer death draws a lot of attention, especially if someone we know personally or a celebrity dies. But when a person recovers from cancer, few people other than themselves or their immediate family may know about it', according to Kondratova. As a result, cancer is often perceived as incurable.
Kotov also mentioned cognitive biases, saying that tumors can vary greatly in terms of severity and prognosis, but certain types of cancer, such as breast cancer, are widely discussed, while most other cancers are virtually unknown to the lay public. 'Pancreatic cancer, for example, is a fast-killing malignancy, which is known to have killed Steve Jobs. A malignant brain tumour can be fatal within a month. Other cancers vary in terms of survival rates. For example, doctors do not always treat thyroid cancer in Japan: a thyroid carcinoma of 1cm in diameter or less is only observed, not treated', he explains.
The expert adds that uncertainty is another factor contributing to fear. 'Any type of cancer is a distressing experience, with many tests and exams and perhaps hospitalisations'. In addition, a doctor cannot always make an accurate prognosis, because each patient's case is unique.
Getting cancer looms as a global life catastrophe for many, especially for younger people, according to Kondratova. 'They are afraid that their employer will fire them and they will end up on the street, needing long-term and expensive cancer treatment. This potential combination of being out of work and having to pay for prolonged medical treatment fills them with such horror that they postpone seeing a doctor until much later', the expert observes.
Kondratova finds some similarity between such attitudes in Russian society and those in the U.S. where many people do not have health insurance and share much of the same concerns. 'In most of Western Europe, however, cancer treatment is fully covered by the government. No matter how poor a person is, they can expect their medical costs to be paid, so their family will not go broke, whatever the outcome', she explains.
In addition to denial and avoidance of the topic, carcinophobia can sometimes lead to overdiagnosis. 'There are people who go and get blood biomarker tests and various kinds of exams in the hope of catching a tumour early and preventing its growth', according to Kotov. He warns that that excessive self-initiated testing may detect something that does not really require treatment but gets treated anyway, sometimes with adverse consequences.
Everyone in Russia is entitled to a comprehensive health screening once every three years between the ages of 18 and 39 and every year once they reach 40. According to the Russian Ministry of Health, routine screening is eight times more likely to detect cancers at an earlier stage, when they respond much better to treatment.
Kotov explained the value of cancer alertness. 'First, we all need to understand that everyone has a baseline risk of developing some type of cancer. And second, there are individual risks which can be assessed so that people may be referred to appropriate screening programmes'. Kotov adds that eliminating negative lifestyle factors such as smoking or excessive consumption of alcohol can lower one’s individual risk of developing cancer.
He also believes that healthcare practitioners other than oncologists can benefit from cancer alertness. 'It happens fairly often that a patient is treated over a long period with various antibiotics for what seems to be, e.g., a strep throat, yet without effect. But it turns out that in fact the patient has tonsil cancer'.
The round table participants agreed that screening as a form of cancer prevention and early detection should become routine. According to Kondratova, such screening is widely practiced in Western Europe, and after a couple of times, people begin to perceive regularly taken tests as routine. 'This practice can lower anxiety and give people the feeling of being in control. While little depends on the patient at the treatment stage, early diagnosis is one area of personal responsibility where people can take matters in their own hands', she said.
Poleshchuk is certain that guidance on what can and should be done to prevent cancer or to detect it early enough should be the first thing people find when searching for information about cancer on the internet.
More broadly, the experts argued that the entire concept of cancer needs to be revisited and presented to society in a different light, emphasising in particular that it is a manageable disease. 'The complexity of cancer cannot be reduced to a simple dichotomy of whether one dies or survives', Berdysheva argues and adds that facing the topic of death can lead to inner growth. From an institutional perspective, she believes that people can be helped with finding new meanings and developing a broader horizon on cancer.