Let’s talk about it! The language of cancer
Being diagnosed with cancer is a confronting time for anyone, including family and friends. Much of the language surrounding cancer can be equally confronting. We slide easily into broad simple phrases, but this can inadvertently label, stigmatise or misinform people about living with cancer.
There is a growing body of evidence suggesting that the way people talk to and about people affected by cancer may influence their readjustment to everyday life. Sometimes we struggle to even name the problem. Many terms are used including; growth, tumour, lesion, lump, mass, or euphemisms or abbreviations such as the “Big C”. All of which can be confusing and lead to misunderstanding.
Think about how often you have read of someone dying after losing a long, brave battle with cancer. Many people find the underlying messages in this upsetting. The language used to talk about cancer often focuses on battle words – those who are cured, have “won” or “survived,” while those who die from cancer “lost” their “fight.” People are described as fighting cancer bravely. But is cancer really something to be won or lost? The term ‘survivor’ can act as a reminder that cancer may still be present, but can also be linked to the less acceptable status of victim.
Using this language is meant to evoke positivity at an unimaginably difficult time in someone’s life and for some this is helpful. But it can have the opposite effect and we need to challenge how we have been conditioned to think and speak about a disease that will affect one third of us at some point.
We don’t talk about people battling heart disease or diabetes or refer to people recovering from other issues of ill-health as survivors. So why do we do it for people diagnosed with cancer?
In a support group when asked about this, Susan said she didn’t like being called a survivor, she said: ‘I simply say I have had treatment for breast cancer. The treatment is now finished. I really don’t want to be labelled by an illness.’
The use of particular words can leave people scared and bewildered. Treatment failure can mean the treatment has been unsuccessful, but do you hold any responsibility for that failure; could you have done better? Restaging for a cancer specialist means doing a series of tests to check on where the cancer is in any particular person. For the person with cancer it might be taken to mean changing the stage of the cancer from a stage 3 to a stage 2 for example.
The term cancer journey is often used to describe what happens after someone is diagnosed with cancer. For some people this is a useful term to help to put a name to what they are going through, but for many this is not useful. A journey is defined as traveling from one place to another. People diagnosed with cancer are not traveling to some destination, they are living their lives every day, as fully as they possibly can.
A person in the cancer centre, when asked about her cancer journey, told the enquirer “If I were on a journey, I would show you pictures from an exotic beach location.” Another lady didn’t like the term “living with cancer”. She said that saying “I’m living with cancer” sounds like I invited it in and we are enjoying tea together. Also not the imagery or assignment I want to give it.
There are lessons for health professionals too. Stories from people whose surgeon tells them after an operation that “they got it all”, when they can’t know that until the pathology has been reviewed and this can take 4-5 days. That phrase suggests there is no more treatment required and yet the surgeon might then need to refer you to a cancer specialist for either radiotherapy or chemotherapy treatments which could stretch for another 12 months. How does this help your understanding?
For people with more advanced cancer it is just as important to be sure a person understands the distinction between terms, for instance, palliative care, does not mean end-stage or hospice care. Palliative care involves symptom management and is indicated for anyone living with a cancer that has spread or become incurable, regardless of whether chemotherapy or other cancer treatments continue. Palliative care should be viewed as a part of treatment and support, not a replacement for it.
It is also very important to consider how it may feel if English isn’t your first language. It is hard enough getting to grips with what is being said, let alone struggling to understand the language that is actually being used to express it.
So it is important for all of us to consider the words we use and to understand that every person’s experience is different. Let’s not allow words to get in the way of understanding; let’s call things what they are and allow the person with the cancer to describe their experiences in a way that is true for them. Let’s not create euphemisms and metaphors that hide meaning and end up causing confusion and harm.