“Can you look at these photos of my wife’s breasts?”

Okay. Not what I expected to hear from my taxi driver at 10.30pm, and certainly not what I wanted to do after just finishing work. But I did it anyway, and without going into details, she certainly needed to see a physician and undergo a breast screening. Immediately.

This is just one of the many question and answer sessions with other people when I travel to and from work. It usually starts with “You work at the National Cancer Society [of Malaysia (NCSM)]?” and ends with me being horrified by the misinformation some have on cancer. Earlier on, I would be surprised as well: these ‘Q&A’ sessions are expected during educational activities held by NCSM as we already anticipate the audience to be curious about cancer; receiving them outside of this setting reinforces our belief that the public needs accurate, evidence-based information about the topic.

And based on the number of claims we debunk every day; this need doesn’t seem to be met. Unfortunately, misinformation and disinformation – spread deliberately to mislead people – on cancer aren’t simply ‘rumours’, like some of the harmless ones we may hear in our communities. They can be deadly.

From avoiding certain food to conspiracy theories that conventional treatment ‘injects poison’ into our bodies, these myths have led to malnutrition of people living with cancer to the delay of diagnoses, which complicates treatment and decreases chances of survival.

The damage is categorised into four types: economic harm which involves financial costs; harmful action resulting from toxic tests or treatment; harmful interaction from interaction with conventional therapies; and harmful inaction in which treatment is delayed.ⁱ A study of women with breast cancer in Malaysia showed that they took two to 36 months to seek treatment after finding a lump.ⁱⁱ In addition, 60 per cent of these women sought alternative therapies – another source of mis- or disinformation – which increase their risk of dying by four to five times.ⁱⁱⁱ

So, despite the harms, why do people believe in the mis- and disinformation? To start, cancer is scary. A diagnosis could result in psychological distress, prompting a search for miracle cures, and the desperation increases the susceptibility of a person. Cancer could also lead to fatigue, as well as challenges with learning and thinking. People with poorer literacy levels in science, health, and the media are also more likely to believe in myths than people with higher literacy levels in these topics, although research shows that health care professionals also share similar difficulties.^iv,v Information overload or even avoidance also increases a person’s exposure to ‘fake news’.^vi

And then there’s the other side: financial incentives gained by selling treatment, books, remedies – many of which promise cures – drive the spread of disinformation. Researchers argue that the main concern is the speed and scale of which the myths travel today due to social media^vii. Adding to the barrier is cancer itself. The complexity of the diseases – as cancer is not one disease, but as many as 200 – makes it challenging to convey and understand accurate information. Rather, information that is false or of lower quality often gain higher engagement on social media.ⁱ

With 94 percent of people living with cancer seeking information from the Internet^viii, we must act to minimise the damage. Suggestions include encouraging health care professionals to actively counter the mis- and disinformation as soon as they arise; proactively warning against false claims; and teaching the public on being discerning.^ix All of this is carried out through the education, media, and community programmes at The National Cancer Society of Malaysia and is why we developed Cancer Matters.

Cancer Matters aims to provide recent and accurate information on cancer, whether it’s from the latest reports or findings, or from our esteemed panel of contributors. We look forward to building a community that helps defeat the mountain of mis- and disinformation that looms ahead, as NCSM is after all an organisation built by and for the community.

Cancer matters to us, because you do.

i Swire-Thompson B, Johnson S. Cancer: A model topic for misinformation researchers. Current Opinion in Psychology. 2024 Apr 1;56:101775.

ii Taib NA, Yip CH, Ibrahim M, Ng CJ, Farizah H. Breast cancer in Malaysia: are our women getting the right message? 10 year-experience in a single institution in Malaysia. Asian Pacific Journal of Cancer Prevention. 2007 Jan 1;8(1):141.

iii Johnson SB, Park HS, Gross CP, James BY. Complementary medicine, refusal of conventional cancer therapy, and survival among patients with curable cancers. JAMA oncology. 2018 Oct 1;4(10):1375-81.

iv Nan X, Wang Y, Thier K. Why do people believe health misinformation and who is at risk? A systematic review of individual differences in susceptibility to health misinformation. Social Science & Medicine. 2022 Dec 1;314:115398.

v Morgan G, Tagliamento M, Lambertini M, Devnani B, Westphalen B, Dienstmann R, Bozovic-Spasojevic I, Calles A, Criscitiello C, Curioni A, Garcia AM. Impact of COVID-19 on social media as perceived by the oncology community: results from a survey in collaboration with the European Society for Medical Oncology (ESMO) and the OncoAlert Network. ESMO open. 2021 Apr 1;6(2):100104.

vi Hwang Y, Jeong SH. Misinformation exposure and acceptance: The role of information seeking and processing. Health Communication. 2023 Feb 23;38(3):585-93.

vii Grimes DR. The struggle against cancer misinformation. Cancer discovery. 2022 Jan 1;12(1):26-30.

viii Braun LA, Zomorodbakhsch B, Keinki C, Huebner J. Information needs, communication and usage of social media by cancer patients and their relatives. Journal of cancer research and clinical oncology. 2019 Jul 1;145:1865-75.

ix Loeb S, Langford AT, Bragg MA, Sherman R, Chan JM. Cancer misinformation on social media. CA: A Cancer Journal for Clinicians. 2024 Sep;74(5):453-64.