“You have cancer!” Despite all treatment options, this diagnosis has not lost any of its terror. Many patients who are confronted with this message from their doctor feel existentially threatened, or at least feel thrown off track. This is only too understandable when they imperatively want to get rid of the malignant tumour in their body – even though one could just wait and see.
The latter approach is an alternative for example in cases of ductal carcinoma in situ (DCIS). One in five women with newly discovered breast cancer actually has this diagnosis. As a general rule, the tumour is surgically removed or irradiated. However, DCIS is strictly speaking not a real cancer, but a precursor. And the risk that a true cancer develops from it is specified as being about 20 percent over a period of up to 40 years with low malignancy tumour cells. Instead of a therapy, regular check-ups therefore also enter the realm of possibilities.
The cancer has to go, the abnormal cells don’t
However, as soon as cancer is first mentioned, it seems difficult to get things going along this procedural pathway. At least this is what researchers conclude from a study in which 394 healthy women were presented the notional DCIS diagnosis once as ‘non-invasive cancer’, once as ‘breast lesion’ and once as ‘abnormal cells’. The possible consequences of this disease were described identically. Then the women were to choose which of three treatment strategies they would prefer in each of the three scenarios: the surgical removal of the tumour, a drug therapy or active monitoring.
Where DCIS was described as ‘breast cancer’, 47 per cent of women opted for the surgery, with the term ‘breast lesion’ 34 per cent and with ‘abnormal cells’ only 31 percent. The differences were significant. Conversely, the proportion of those who wanted only active surveillance for the same diagnoses respectively climbed from 33 to 48 and 48 percent; around 20 percent voted for the drug therapy each time. With the shift given by the doctor in his or her diagnosis, the treatment preference of the patient also shifted.
A mechanism leading to oversupply?
This result appears to be confirmation for those physicians who believe that the choice of words leads to a mechanism involving overtreatment. They argue that these days tumours can be revealed in the earliest stages. Among them are precancerous lesions and also slow-growing tumours that would never hinder the patients. Thus, the word ‘cancer’ in the meantime stands for a broad spectrum of tumours with very different prognoses, whereas in the minds of patients there remains the idea of one life threatening disease, which distorts treatment preferences. Even those affected with low-risk tumours would expose themselves to treatments that prolong life not one iota, yet are accompanied by some significant risks and side effects.
Some doctors are therefore urging that in future only those tumours which grow rapidly without treatment be called cancer. For those types with low risk potential – as are often encountered, for example, in the breast, lung, prostate and thyroid – one should use terms that sound less dramatic. Proposals circulating are constructs such as ‘intraepithelial neoplasia’,’epithelial tumours with low malignancy’, or ‘indolent lesions of epithelial origin’ (IDLE).
Patients prefer to stay on the safe side
Even if this approach seems understandable, it nonetheless has its weaknesses. Doctors can hardly estimate how a tumour of low malignancy will develop in any individual case. That is precisely the first thing to deal with before honing in on the semantics, say the critics. Apart from that, a relativisation of the risks might elude the needs of patients. Such was the information derived from participants in a study of the British Breast Cancer Screening Program, better to accept the disadvantages of an oversupply than those of undersupply.
A new wording for cancer diagnoses may be fully useful, but it would have to be accompanied by further measures. This includes, among other things, explaining a diagnosis with all its consequences as well as possible – regardless of whether the term ‘indolent lesion of epithelial origin’ is chosen, or simply cancer. Whether doctors are aware of the power of their words in every situation remains an open topic for the moment.