My Cancer. My Words.

“The language that is used when speaking with a patient is probably one of the most important things about being diagnosed – and that language, I think, has to change.”

Leanne Pero, ex-dance teacher, entrepreneur and author who was diagnosed with breast cancer in 2016.

In a world where about half of us will receive a cancer diagnosis at some point in our lives¹, the words we use to talk about it matter.

Through an exploratory survey of people living and working with cancer in the US and UK, we found two thirds of people living with cancer (67% of 1,871 patients), and almost all health care professionals (88% of 142 HCPs), believed that language impacts their lives, or the lives of those living with the disease.²

While this is a snapshot of just two countries, it suggests people have strong likes and dislikes about specific words and phrases used to describe cancer. Our survey also discovered people feel certain words can even affect the way they choose treatment – suggesting the way we talk about the disease could be acting as a barrier to cancer care for some people.  

That’s why Novartis, together with a group of experts – and through a survey of over 2 000 people living and working with cancer – is exploring how the use of language affects people living with cancer to initiate discussions around the importance certain words hold when talking about the disease. 

We invite you to explore it with us. 

Explore the top responses from over 2,000 people living and working with cancer on the words and phrases that came to mind when they thought about “cancer.” 

The size of each word indicates the frequency in the data. The bigger it is, the more it was mentioned. 

• Left-click (one finger click on Mac) to explore the words that were most commonly connected to the selected word. For example, for respondents who associated cancer with life changing as their first word, they were most likely to associate strength, family, and distressing as some of their second words
• Use the Reset button to exit/return to landing page 
• Right-click on words (two fingers click on Mac or press and hold for 2 seconds on mobile) to reveal all the individual responses featuring the selected word
• Filter the data by roles (eg, patient, healthcare professional), location (eg, UK, USA), and cancer type (eg, breast, prostate, hematological cancer)
• Search for words featured in the data by using the search function
• For mobile: Press and hold for 1-2 seconds in the middle of a word. Then, choose between the options Word Association or Individual Responses. 
  Word Association allows you to explore the words that are most commonly connected to the selected word. Individual responses reveals all the individual responses featuring the selected word

For the purposes of the visualization, the number of words displayed has been restricted to 240. Data was monitored against Novartis community guidelines, and cleaned to correct for typos, to ensure consistency in capitalization of words, and to group abbreviations with long form of words (eg, “chemo” and “chemotherapy”). 

The activity is for background and educational purposes only and based on an exploratory survey of people living and working with cancer in the US and UK. Results depict word frequency only.  It is not intended to diagnose, treat or provide medical advice about a health problem or disease or to imply any correlation between words. As always, we recommend consulting with your physician or qualified health care professional on any medical condition.

Explore how language affects people living with cancer²

People living and working with cancer most commonly associate the word “cancer” with “death,” “chemo”/ “chemotherapy,” “pain,” and words that describe fear and anxiety – no matter where they live, what type of cancer they have, or how long they’ve had it.

When we asked those living with cancer to choose their own metaphors to describe the disease, they overwhelmingly chose expressions like “time bomb” or “dark clouds” hanging over them.

When we explored specific phrases the world often used in relation to cancer, like “battling cancer” and “survivor,” our respondents had more than just likes and dislikes – they believed certain words could even have a positive or negative impact on cancer treatment choices.

Words like “victim,” “sufferer” and “cancer stricken” were believed to have the worst effect on their ability to choose, continue, start, or stop a treatment plan (See Graph 1).

Some words were particularly “noisy,” generating strong opposing views among people living and working with cancer. Metaphors – words like “warrior,” “hero” and, “survivor” – were most likely to divide opinion. 

Graph 1: Proportion of patient respondents indicating the perceived impact of common words or phrases on the ability to make treatment choices. 

“When we worked with focus groups at Cancer Support Community a couple of years ago, we similarly found differences in preferences around the words people like to describe cancer. People living with cancer were okay with the word 'patient’ and some loved the word ‘survivor’, but others were afraid of using that word. It was almost a feeling of jinxing themselves.”

Claire Saxton, Executive Vice President of Patient Experience at Cancer Support Community and member of the My Cancer. My Words. expert Steering Committee 

Strikingly, although some words appeared to have a more positive impact overall, there were no universally perfect words. Words like “patient,” which respondents generally perceived as positive or neutral, were also negative for some.

But words don’t appear to impact everyone in the same way. 

Attitudes to words or phrases were broadly similar across genders, age groups and type or stage of cancer. Instead, where a person lives, how much they earn, or whether they attended higher education, appeared to be the main factors that determined how they responded – factors that are often invisible to others.

In the UK, nearly all metaphors are perceived to have a more negative impact on treatment compared to the US.  For example, half of respondents in the UK think the word “warrior” has a negative impact on their ability to consider treatment, while most in the US think it has a positive impact (See Graph 2).

Graph 2: A comparison of responses from respondents  in the US and UK on the perceived impact of common words or phrases on their ability to make treatment choices.

People living with cancer, and caregivers, know better than anyone what it means to contend with serious disease. This is why it is so important that we listen to them and learn from their experiences to inform everything that we do – whether it’s the discovery of new medicines or the way that we, as a society, talk about the disease.

“The language we use is incredibly powerful. And so, by starting these conversations and identifying the barriers that exist to providing an exceptional level of care to patients, when it comes to our language and our narrative is an incredible way to transform the way we deliver cancer care.”

Dr Shikha Jain, MD, FACP, Associate Professor of Medicine, University of Illinois and member of the My Cancer. My Words. expert Steering Committee

“One of the things that we know is how important the support of friends and loved ones is. And at that point, labels don't matter. What matters is calling them by their name and letting them know that you're there for them and that you're going to try to have things be as normal as possible within the overwhelming situation of dealing with cancer treatment.”

Claire Saxton, Executive Vice President of Patient Experience at Cancer Support Community and member of the My Cancer. My Words. expert Steering Committee

Additional information about the research 

Novartis conducted the first transatlantic survey of 1 871 people living with cancer and 142 healthcare professionals in the UK and the US exploring perceptions on the way that we currently talk about cancer. The survey was conducted online by Dynata in February 2023.  

We convened a multidisciplinary panel of experts from across the medical (Dr Shikha Jain, MD, FACP, Associate Professor of Medicine, University of Illinois), patient advocacy (Claire Saxton, Executive Vice President for Patient Experience and Cancer Support Community), psychology (Dr Simon De Deyne PhD, Cognitive Scientist at the University of Melbourne ) and linguistic (Dr Elena Semino PhD, Professor of Linguistics and English Language at Lancaster University) fields to advise on a research approach that would allow us to gather insights into the way that people living with cancer and healthcare professionals emotionally experience the language of cancer, and to what extent the current words being used to describe cancer could be impacting treatment.

The survey asked for people’s preferences (likes and dislikes) to words commonly used to describe cancer, the perceived impact that these words had on their ability to make treatment choices (when to choose a treatment plan, start or stop a treatment plan, or continue a treatment plan). The words included in the survey were selected based on a review of previous studies, a media landscape analysis, and guidance from our expert panel. 

The survey also requested a mix of word association and free text responses to explore the immediate emotional response to the word “cancer”. These questions asked patients to think of words they immediately associated with “cancer” – as many as possible – and then to write down metaphors they might use to describe cancer to a family member or friend.

Our research, supported by a wealth of previously published literature^1,3,4, emphasizes the need to pay attention to the words that we all use when we talk about cancer.

_{References: 
My Cancer. My Words explores the perspectives of patients and oncology healthcare professionals on the language of cancer and the impact it can have on treatment. The project specifically focuses on the impact that words have on treatment choices. Our research emphasizes the importance of cancer language, including the use of cancer metaphors, including battle metaphors and emotions, like fear, hope or anger, that these words or phrases can evoke.}