Renaming cancer: Back to the future, but will it work now

A joint Australian-US paper in the BMJ has recommended renaming low risk conditions that are currently called “cancer”. The authors advise that tumours such as small papillary thyroid cancer, low-grade breast intraduct cancer, and localised low-grade prostate cancer are examples of these low-risk conditions. There are many others.

There has been an outpouring of criticism from the public. I heard an hour of talkback radio with people going nuts about why they want to know if it’s cancer so that it can be cut out.

There are two problems with the idea of renaming the word cancer.

  1. The majority of humans that use the Net do not want to read more than 300 words, do not want to watch a video more than 3 minutes long, will never read about the evidence regarding types of cancer and survival, or if they do read, when faced with a choice, most will opt for aggressive treatment. Low grade prostate cancer? You say: “You are far more likely to die with the cancer, not from the cancer” They say: “I don’t care, cut it out”. If they are told the diagnosis is low grade cancer, and active surveillance is recommended, any number of forums will advise “Mate, it’s cancer, it can kill you, get rid of it”
  2. The word cancer is never used by pathologists when reporting a biopsy. The pathologist will examine the tissue under the microscope, will often use special immune stains, and if the pattern, cytology and stains fit, she will use a term which indicates the possibility of spread. These words include carcinoma, sarcoma, lymphoma, blastoma, there are many others. She will modify the description with terms like low-grade, high grade, in situ, invasive, indolent, or a grading system of numbers, or some other words. The whole idea of medical training is for surgeons, GPs, and other specialists to understand the meaning of risk, assess the risk of spread in time,  and pass that information on to the patient.

How did we handle this issue in the 60s and 70s? We didn’t tell the patient a low grade lesion was cancer. We said it’s all fine, nothing needs to be done, we’ll watch it. We knew it would almost certainly not kill the person, although rarely it might. We cannot use this approach in 2018.

The answer is not to avoid the word cancer. The answer is to communicate:

  1. The odds of death if nothing is done
  2. The odds of death due to treatment
  3. The adverse effects of treatment

then let the patient decide.

Now, if a committee of experts (which will always include pathologists) decides to change the name of a low grade malignant tumour from, say, low-grade intraduct carcinoma to ‘atypical intraduct lesion’, so be it. It’s behaviour will not change. If the patient asks ‘Is it pre-malignant?’ The answer will have to be ‘yes’. In fact, I suggest that the treating physician must inform the patient that the lesion is either pre-malignant or a very low grade cancer. And a full explanation as noted above still needs to be given.

As we often say – cancer is a word, not a sentence. We can’t get rid of the word. But we can explain it better.

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