About the Project


The Forgotten Cancers Project aims to understand the causes of less common cancers such as non-Hodgkin lymphoma, leukaemia, multiple myeloma, kidney, bladder, stomach, brain, liver, oesophageal, pancreatic, endometrial/uterine, thyroid, gallbladder, small intestine, bone and other rare cancers as relatively little is known about them.

By studying the roles of genes, lifestyle and early life environment the research is seeking to understand why people develop these cancers, to be in a better position to improve the prevention and treatment of these diseases in the future.

The Forgotten Cancers Project is run by Cancer Council Victoria, as part of a consortium including hospitals, universities and research institutions both in Australia and overseas. The chief investigator is Professor Graham Giles, Director of the Cancer Epidemiology Centre at Cancer Council Victoria. 

The conduct of the Forgotten Cancers Project has been approved by the Human Research Ethics Committee of Cancer Council Victoria .

Study Design

The Forgotten Cancers Project uses a case-control study design.

For each case one unaffected relative (control) is recruited. Through the completion of a series of questionnaires, all relatives of those that have a family history with numerous cases of less common cancers (high aggregate families) are also recruited to the study.

The population is Australian residents aged 18 years and over at the time of a primary cancer diagnosis of a less common cancer. A less common cancer is defined as any cancer apart from the five most common cancers (lung, prostate, melanoma, breast, colorectal) or cervical cancer or mesothelioma, as much is already known about these cancers. While any other type of cancer was considered eligible, the study focused on 8 target cancer types: bladder, brain, kidney, leukaemia, multiple myeloma, endometrial, pancreas and NHL. We aimed to recruit 300-400 of these cancers by the end of 2016.

Participants were asked to complete four questionnaires:

  1. Lifetime Calendar : places participants lived and worked throughout their lifetime.
  2. Family History Questionnaire : participants’ family history of cancer in first degree relatives. 
  3. Health and Lifestyle Questionnaire : participants’ health conditions, medical tests, and lifestyle.
  4. Diet Questionnaire : participants’ diet.

Those identified as having a high aggregate family were also invited to complete a family history questionnaire specific to second degree family members.

Participants were also asked to complete a saliva sample or alternatively a blood sample. Samples are stored and processed at The University of Melbourne’s Genetic Epidemiology Laboratory (GEL), located at the Victorian Comprehensive Cancer Centre. DNA has been extracted and aliquots of DNA are stored in a bio-repository.

Recruitment ran over a period of 5 years, from October 2011 until October 2016.

The Forgotten Cancers Project team

Prof. Graham Giles Prof. Graham Giles BSc, MSc, PhD Director, Cancer Epidemiology Centre

After post-doctoral work on the epidemiology of leukaemia and lymphoma in Tasmania, Graham Giles joined Cancer Council in 1983 as Director of the Victorian Cancer Registry. In 1986, he was appointed Director of Cancer Epidemiology Centre, and in 2001 became Deputy Director of the Cancer Control Research Institute. He has honorary professorial appointments at Melbourne, Monash and Deakin Universities, and serves on several national and international committees including the Scientific Council of the International Agency for Research on Cancer in Lyons, France.


Fiona Bruinsma
Fiona Bruinsma, BBSc, Grad Dip App Psych, MA App Sc (Epidemiology), Dr Pub Health Research Coordinator - External Programs

Dr Fiona Bruinsma has worked in cancer and reproductive epidemiology for over 15 years. She completed a Doctorate of Public Health in 2010; the topic of her thesis was ‘Pregnancy outcomes following treatment for cervical dysplasia'. Since joining us in early 2011 she's been involved in coordinating studies investigating lifestyle and genetic risk factors for prostate cancer, kidney cancer and multiple myeloma.