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‘Cancer’: what is really in a name?

We hear increasingly about the importance of tackling overtreatment, but less often about how overtreatment plays out in the lives of patients and their families.

In the article below, Brooke Nickel describes how the use of the word ‘cancer’ can lead to so many issues for people affected, and how it is time to re-think its use.

This article is published as part of the TOO MUCH of a Good Thing series, which is investigating how to reduce overdiagnosis and overtreatment in Australia and globally, and is published as a collaboration between Wiser Healthcare and Croakey.

To follow the series, bookmark this link, and follow #WiserHealthcare on Twitter.

[divide style=”dots” width=”medium” color=”#dd3333″]

Brooke Nickel writes:

No medical diagnosis has historically evoked such universal fear as ‘cancer’. For decades the word cancer has mostly been associated with intense illness and death. This has been further ingrained in society by public health messaging that cancer screening saves lives, coupled with images of cancer patients undergoing chemotherapy and stories of loved ones struggling with the disease. The clinical definition of cancer underpins this image by describing a disease that, if left untreated, will grow relentlessly and spread to other organs, killing the host. For some, this is the unfortunate reality. However, over the past few decades, our understanding and knowledge of cancer have progressed.

Brooke Nickel

Now, the evidence indicates that some low risk cancers are non-growing or so slow growing that they will never cause harm if undetected and untreated. The strongest evidence for this has been shown in localised prostate cancer, low grade ductal carcinoma in situ (DCIS) of the breast, and low risk papillary thyroid cancer. Evidence has also begun to emerge in melanoma in situ, small lung cancer and certain small kidney cancers. Recent evidence estimates that 1 in 5 major cancers in Australia may have been overdiagnosed between 1982 and 2012. The consequence of overdiagnosing low risk cancer is that the diagnosis can cause more harm than good, through unnecessary stress and anxiety to individuals and their families, unnecessary side-effects associated with surgery or radiation and unnecessary medical costs.

Active surveillance as an option

Given the harms of overdiagnosis and overtreatment of these low risk cancers, active surveillance is now recognised as a safe and effective management option for some cancers. Active surveillance consists of closely monitoring the person affected and only providing treatment if there are changes in test results that show the cancer is getting worse. In localised prostate cancer, active surveillance has been a recommended management option for many years, and in low risk papillary thyroid cancer active surveillance has recently been recommended for very low risk tumours. Trials are currently being conducted across the world to assess active surveillance in low grade DCIS (here, here and here).

Although active surveillance and other more conservative treatments are recommended for the management of some cancers, people have a strong perception that aggressive immediate treatments are always required. It has been shown that the majority of men with localised prostate cancer still prefer radical prostatectomy or radiation therapy, rather than active surveillance to manage their diagnosis. Similarly, in DCIS it has been shown that women are increasingly opting for more aggressive treatments such as mastectomy and bilateral mastectomy rather than lumpectomy, even though these treatments do not improve breast cancer-specific survival.

Assumption that surgery is best

The label ‘cancer’ may make it harder for clinicians to recommend, and for patients to choose, active surveillance as a management option because of an overall strong fear of cancer and the longstanding assumption that aggressive surgery is the best treatment option. This has led to experts in the cancer community to question the label ‘cancer’. Otis W. Brawley, former chief medical officer of the American Cancer Society, has been quoted saying that: “We need a 21st-century definition of cancer instead of a 19th-century definition of cancer, which is what we’ve been using.” Furthermore, the World Health Organisation (WHO) currently states “there is an urgent need to integrate [new understanding of cancer] into cancer classifications internationally.”

Over the past five years our research group has tried to understand how the label ‘cancer’ may impact patients’ experience of diagnosis, psychological outcomes, and, importantly, treatment preferences in the context of the low risk cancers which may never cause harm. Our qualitative work has shown that some patients with very low risk papillary thyroid cancer describe being constantly worried after their diagnosis and treatment, and report continuously thinking that they are going to die. We have also found that patients report wide-ranging quality of life issues related to their diagnosis and treatment across physical, psychological and lifestyle domains. We have conducted a systematic review and two experimental studies (here and here) which demonstrated that use of the label ‘cancer’ in reporting a patients diagnosis (compare to a non-cancer label), significantly increased preferences for invasive surgery as treatment compared to active surveillance, and also significantly raised levels of anxiety, and willingness to accept more side-effects and harms from treatment.

Re-naming low risk cancers

We recently wrote an analysis article in The BMJ which collated some of the above evidence and proposed renaming and re-classifying low risk cancers for which there is evidence of overdiagnosis and calls from international experts to change the terminology and definition of cancer. Historically, there are some precedents for removing the label ‘cancer’ and re-classifying conditions where tumours have clearly been shown to be indolent and unlikely to cause harm. These include in 1998 in low risk bladder cancer, in 2001 in low grade cervical cancer cells, and more recently in 2016 for a variant of papillary thyroid cancer.

While a system-wide change for a number of other low risk cancers has and will create controversy, and will take time, we are now trying to understand what the community thinks of the idea of renaming and reclassifying low risk cancers by conducting community juries (a deliberative democratic method). We are also trying to work with pathologists to understand and consider re-calibrating diagnostic thresholds and/or alternative labels for low risk cancers.

There is no easy solution, so for now we should all be aware that for some the label ‘cancer’ may be doing more harm than good.

Dr Brooke Nickel is a Postdoctoral Research Fellow in The University of Sydney School of Public Health. Her research focuses on understanding the psychosocial impact of cancer diagnosis and treatment, and how to improve cancer communication and decision making.