Cancer words matter

  • MPNRF | February 20, 2024

    Cancer is such a powerful word that it is often referred to as “The Big C” and comes with a loaded associated vocabulary, including words that can have both empowering or disturbing triggers, depending on the individual hearing it.  

    Not many people go through life without being touched by cancer in some way. This means there are millions of people living with cancer and those who “beat” it, as well advocates, caretakers, healthcare professionals, family and friends who all may communicate about cancer in different ways – including using words like warrior, victim, hero, survivor and thriver. 

    Even when people choose words carefully, and in a well-meaning way, some descriptions of cancer can cause strong reactions that can have weighty effects. 

    Because words do matter, Novartis surveyed 1871 cancer patients and 142 healthcare professionals in the U.S. and U.K. to understand the impact of commonly used words associated with cancer. They found that cancer language is indeed both powerful and divisive. 

    Novartis found that the words most often associated with cancer are death, chemo/chemotherapy and pain. When asked to describe cancer through metaphors, most common were “time bomb” and “dark clouds.” This underscores that despite the tremendous advances in survival and treatments, the fear and anxiety surrounding “The Big C” continues to prevail.

    The survey also found:

    • 67% of patients and 88% of healthcare professionals believe language impacts the lives of people living with cancer.  
    • Patients reacted badly to the words “victim” and “sufferer,” with 78% and 72% of respondents respectively saying the words negatively impact treatment choices. 

    What do some MPN patients think about these findings? We asked members of the MPNRF Patient Impact Council. 

    Dana Turner lives with polycythemia vera (PV) 

    “This is really interesting and I’m so glad there’s research on the use of language and its impacts on the treatment experience and morale in patients. I think this all greatly depends on the patient’s own interpretation of their diagnosis and I think it’s trickier with MPNs since many of us don’t experience ‘cancer’ in the traditional and more acute sense. Personally, due to my low symptom burden and positive response to Besremi (ropeginterferon), I never have identified as a ‘cancer’ patient. I always refer to PV to friends and family as my ‘blood disorder’ because I don’t feel my experience is equal to someone else’s who may have a higher symptom burden, or even someone with leukemia or other acute cancers.  

    “I’d personally feel more positive if doctors referred to my personal experience as a ‘treatment journey’ because it does not imply that I’m heroic or thriving (which is up to the patient to identify, not the provider), and it doesn’t imply negative language either. A journey simply means someone is navigating a path which can include both positive and negative experiences and in my opinion, patients of all kinds should feel supported when feeling any emotion associated with their condition. Addressing patients with purely positive language may lead to dismissing negative experiences, anxiety, or depression associated with their diagnosis or prognosis.”  

    MJ Tooey lives with ET 

    “I agree with much of what Dana said, although I do refer to my MPN as a “chronic blood cancer” that I have lived with for almost 20 years. It is a journey (and I like that term) with different turns. We are all on different paths – outcomes, treatments, symptoms – sometimes the only thing linking us is our diagnosis. After I tell people about my cancer, if they are genuinely curious, I will explain further. I am not fond of the ‘battle words’ (warrior or fighter), although I have had ups and downs.”  

    Jean Deisch lives with PV   

    “I personally do not like the term ‘Survivor.’ We don’t have cures at this point. I just state I’m dealing with blood cancer. With my support group, when appropriate, I like to make light of the diagnosis, and say we’re SPECIAL!”