Too many patients with low risk cancers are undergoing unnecessary diagnostic tests, procedures and potentially harmful treatments because the terminology around 'cancer' generates fear and anxiety, agree two experts who disagree over whether a change in terminology or better education is the key. In the debate, published by the BMJ on January 23rd, Dr Laura Esserman, director, University of California San Francisco (UCSF) Carol Franc Buck Breast Care Center, San Francisco, USA, suggests that greater detection of low-grade cancers has created anomalies in which patients with non-life threatening disease are exposed to risks associated with investigations and treatments that are not warranted clinically. Her solution is that the terminology around cancer should be changed for these less serious diseases, so that patients feel less anxious and would be easier to guide into active surveillance. What's in a Name? However, while Dr Murali Varma, consultant histopathologist, Department of Cellular Pathology, University Hospital of Wales, Cardiff, agrees that there is an issue around the identification of low-grade tumours, and that labelling them as cancer creates anxiety, he has a different solution. "Both of us agree that it's a good idea to change the names of some lesions," he told Medscape News UK. "Where we disagree, and where I'm coming from, is, yes, it's a good idea to change the name but we've got to be very careful about what name we give, because the new names can also cause anxiety." For Dr Varma, it would make more sense to better educate the public about cancer, so that they understand that it is an umbrella term that is associated with many different potential outcomes. Moreover, he suggests that patients with the lowest risk cancers could even stop having follow-up and active surveillance. Dr Esserman opened the debate by highlighting that 'cancer' refers to a disease with a wide range of metastatic potential, ranging from ultralow, defined as <5% progression over 2 decades, to extremely high, equating to a >75% change of progression over 1 to 2 years. An example of that, she says, is breast cancer. Breast Cancer Debate This umbrella term encompasses tumours with a high early recurrence risk, which typically require cytotoxic and biological therapies; those with a risk of late recurrence, best mitigated with hormonal therapy, and ultralow risk tumours associated with a breast cancer-specific survival at 10 years of 100% even in the absence of systemic therapy. Dr Esserman says that, while we are now able to identify lesions with negligible risk through tests that indicate the risk and timing of recurrence, "we have yet to use them to change how we define cancer". She points to prostate cancer, where prostate specific antigen testing has led to so many ultralow risk tumours being detected that it has fallen out of favour as a screening method. Moreover, up to 70,000 women in the USA undergo surgery every year to have ductal carcinoma in situ (DCIS) removed, despite it being "rarely, if ever, lethal" and rates of invasive breast cancer continuing to rise. Instead of women "being rushed to the operating room," she suggests that "we should offer the option of trials of active surveillance". Dr Esserman suggests that DCIS should be seen as a risk factor for cancer, and be renamed as 'indolent lesions of epithelial origin' to remove the connotations associated with 'carcinoma'. This echoes recommendations made by Dr Esserman and colleagues as part of a National Cancer Institute sanctioned initiative back in 2013 that low-risk lesions should stop being called 'cancer', and an earlier call for DCIS to be renamed. She writes: "The ethical imperative to relabel lesions that are ultralow risk is not only about sparing patients the unnecessary physical and psychological trauma of a cancer diagnosis and the attendant fears of recurrence or side effects of treatment." She explains that treatment de-escalation for breast cancer "is appropriate but has proved extremely difficult for low risk breast lesions…because it is difficult to encourage patients to wait and watch once they have been told they have cancer". Changing Terminology Dr Esserman believes that a change in terminology "would lead to a change in what researchers investigate and what clinician investigators report" and "is one of the most important steps we can take to improve the outcomes and quality of life of patients with cancer". In reply, Dr Varma points out that one of the issues in believing that we understand the prognosis of a low risk tumour is that, by definition, excising it for definitive diagnosis "alters its natural course". As he explained to Medscape News UK, "the result of that is we tend to assume that these patients have been cured by the surgery, when actually nothing might have ever happened to them, even if they had not been treated." Under Diagnosis, Under Treatment The other side of the problem is that it is assumed that patients whose disease progressed and who died "were under diagnosed and under treated, when some of these patients may have [had] very aggressive disease which would have done badly even if we had picked it up earlier". This is not an issue confined to the UK or the USA, he emphasised, as "all across the world we overestimate the degree of under diagnosis and under treatment, and underestimate the degree of over diagnosis and over treatment". In the debate, Dr Varma argues, however, that renaming Gleason score 6 prostate cancer, which is not associated with metastasis, as non-cancer "would not be helpful" to a patient. "Renaming cancers would also affect patients who had had radical therapy before the new terminology was adopted due to their perception of having had unnecessary major treatment for a non-cancerous condition." Dr Varma believes that terminology changes could also cause "confusion and anxiety", especially if the new name hinted at uncertainty on the part of doctors, such as renaming low risk thyroid cancers as having "uncertain malignant potential", as this could be misinterpreted by patients to mean that the doctor is uncertain whether the tumour is harmless or lethal. Managing Resources He also points out that, for the patient with a low-risk tumour, now labelled as non-cancer, changing the terminology would do nothing to help with the psychosocial and financial consequences of protracted follow-up as part of active surveillance. "The other problem for us in the NHS is, if we follow-up harmless cancers…that is using up resources," Dr Varma said. "When we use CT scans and MRIs to follow up patients with very low-risk tumours, you are delaying other patients' CT scans and MRIs, who actually need them more urgently." Dr Varma said that it sounds "slightly counterintuitive but, by over diagnosing one patient, you can kill another patient because you are diverting resources into treating or following up these harmless cancers, and you don't have those resources to treat the more clinically significant diseases. "It may be cancer, it may be even just cleaning the ward to avoid MRSA, but you are diverting resources into over diagnosis and over treatment." 'Terrifying' Name Instead of changing the name of low-risk cancers, Dr Varma would like to see a greater emphasis placed on educating healthcare professionals and patients on the meaning of a cancer diagnosis. He told Medscape News UK that an analogy would be that of 'infection', as a lung infection can range from an essentially harmless bronchitis to a life-threatening pneumonia or severe acute respiratory syndrome. That process needs to start, however, before patients arrive in the clinic to be diagnosed with cancer. "What we're doing currently is we give people a diagnosis of cancer and then try to educate them," Dr Varma said, "and most of them are terrified when they hear the word 'cancer'. "We need to educate the general public, probably more via education in schools…before they become patients." Another area of contention is the threshold used to define what level of risk constitutes cancer as opposed to non-cancer. Pointing to the example of the debate over the level of blood pressure that indicates whether or not a patient should be treated for hypertension, Dr Varma said that it's entirely subjective whether a given risk of harm is sufficient to be labelled cancer. "Suppose I say that, at any risk of spread you should call the tumour cancer, then you will end up over treating a very large number of people. "On the other hand, if I say it's only at a 25% risk of metastasis I will call it cancer, then you will end up under treating a significant number of people." However, he said that raising the diagnostic threshold slightly could result in very-low risk tumours being re-categorised as benign, precluding the need for anxiety-inducing alternative terminology and protracted follow-up in these patients, who are very unlikely to come to harm. Source
