Pathways to Thyroid Cancer Diagnosis Study

Cancer Council NSW is studying the pathways taken to a diagnosis of thyroid cancer in NSW.



Study Personnel

Chief Investigator

Professor Dianne O’Connell, Cancer Research Division, Cancer Council NSW

Associate investigators

Dr. Mark Sywak

Professor Steven Boyages

Associate Professor Owen Ung

Project Coordinator

Clare Kahn, Cancer Research Division,  Cancer Council NSW

Aims of the study

The primary aim is to describe how people arrive at a diagnosis of thyroid cancer in NSW: what symptoms were first noticed, what tests were conducted, which specialists were seen and so on. This is called a “˜pathway to diagnosis’.

The second aim is to compare these pathways between different groups of people, ie is there a difference for people of different ages, different sexes, and different places of residence, different ethnicities and with different medical insurance status.

This information will help to determine why it is that the last few decades have seen an increase in the number of people being diagnosed with thyroid cancer in NSW.

Study protocol

Newly diagnosed patients with thyroid cancer, who provide written consent, will be eligible to participate in the study. The NSW Central Cancer Registry will contact these eligible cases to determine their interest in participating. Cancer Council researchers will contact those who are interested. Study participants will be asked to fill out a questionnaire, and to provide permission to extract data from Medicare Australia on the investigations conducted to diagnose their thyroid cancer.

Study Findings

We found that the majority of patients had their thyroid cancer discovered incidentally, during unrelated medical testing or treatment, or as an incidental finding during pathology testing after surgery for a benign thyroid disorder. The pathways through which people were diagnosed were:

  • 40% initially presented due to patient concern about a lump or obstructive symptom
  • 16% doctor noticed a lump of which the patient was unaware
  • 11% incidental findings of a radiographic procedure for a different health concern
  • 26% discovered after diagnosis of a benign thyroid disorder
  • 7% through other pathways

Men and women, and patients of different age groups tended to have different patterns of diagnosis and tumour size was significantly different in the pathway groups. It is likely that diagnostic changes have contributed to the increase in incidence of thyroid cancer in NSW, but as this does not explain all of the increase observed it is possible that a real change in cancer incidence has also occurred.

Additional analysis of post-surgical pathology reports indicated that these reports were often missing information that is generally considered to be a critical factor in the prognosis and treatment decisions of thyroid cancer patients.

Study news

Analysis is complete and the primary results of the study have been published in a peer-reviewed journal: Pathways to the diagnosis of thyroid cancer in New South Wales: a population-based cross-sectional study, Cancer Causes and Control 23(1) 2012).

Additional results regarding the completeness of pathology reporting of thyroid cancer in NSW have also been published in a peer-reviewed journal: Postsurgical pathology reporting of thyroid cancer in New South Wales, Australia. Thyroid 2012;22(6):604-610.

Contact us

If you would like more information about the study please call the project coordinator, Clare Kahn on (02) 9334 1745  or email