The Forgotten Cancers Project - Focussing on the causes of less common cancers.

The remaining 40% of cancer diagnoses are less common cancers. The most frequently diagnosed of these is pancreatic cancer.

Common cancers, or cancers for which significant progress has been made in understanding their causes are excluded. Excluded cancers are: breast, prostate, bowel, lung, skin (melanoma and non-melanoma), mesothelioma and cervical.

Many of the less common cancers are associated with poor survival, especially compared with common cancers (apart from lung cancer). Less common cancers together account for 54% of all cancer-related deaths in Victoria, yet we still do not fully understand their causes, that is, the knowledge we require to inform our prevention programs.

Our work at Cancer Council Victoria encompasses all cancers, but we have not forgotten the impact that less common cancers have on thousands of lives each year. We believe now is the time to increase our focus on less common cancers.

Unfortunately, you are only eligible to participate if you have a primary diagnosis of one or more of the targeted cancers. If you are unsure whether you are eligible, please register for the study and we will determine your eligibility.

The Forgotten Cancers Project is an initiative of the Cancer Epidemiology Centre at Cancer Council Victoria.

Absolutely. As the incidence of less common cancers is low, we are inviting all Australians to take part. We will also be collaborating with our colleagues across the country and internationally to pool our efforts and increase our sample sizes.

You will be asked to provide information on your family history of cancer, health events, and other aspects such as lifestyle and occupation. You will also be asked to provide a saliva sample for genetic analysis.

A saliva kit will be mailed to you when you register and can be returned to us via reply-paid post.

Should we consider that a blood sample would be useful, we will contact you directly and provide further instructions. There is absolutely no obligation to provide a blood sample but it would be beneficial to the study if you did.

We will use your blood and saliva to obtain DNA to study your genes. Your genes are made of DNA and are inherited or passed down from your parents. The DNA in your genes contains the recipes responsible for your individual characteristics such as eye and hair colour and also for your risk of developing diseases such as cancer. Your genes are generally very similar to those from other people but everyone's DNA contains many very small changes (sometimes called 'variants' or 'mutations'). Most of these DNA changes will have no known effect on your health but some can increase or decrease your risk of cancer.

One of the aims of this project is to identify DNA changes associated with the risk of less common cancers.

Your blood, saliva and DNA samples will be stored indefinitely at Cancer Council Victoria and the Genetic Epidemiology Laboratory at The University of Melbourne. Samples will be stored securely and only authorised staff will have access to them. All samples will be labelled with a unique code. Only designated staff will have the key to link that code with your personal details.

Information that identifies you, such as your name, date of birth and address, is only available to the following: staff employed by the Cancer Council Victoria to maintain contact with you; the external company contracted to manage the questionnaire data; and the external laboratory that processes your samples.

All written information that identifies you is stored in an area with access restricted to a small number of staff within these organisations. All individuals who have access to confidential data are required to sign confidentiality agreements. All electronic records that have your name and address are stored on a password protected computer system. Information that does not contain your name may be made available to other researchers, including researchers interstate and overseas for studies that have been approved by Cancer Council Victoria's Human Research Ethics Committee. This information may include samples of your blood or DNA. We will not include your name or other identifying information in any publication. We have no plan to dispose of the information, blood or DNA samples we collect because the project will continue indefinitely.

You can also see our privacy policy here

All participants will occasionally be sent newsletters, which will highlight any interesting findings, study results as they become available and future plans for the study. Regular study updates will also be posted on the Forgotten Cancers website.

Research can take a long time. We need to collect and test samples from many people before we can draw meaningful conclusions. The research using the information you provide could take some years to complete.

We will not be providing you with personal results, unless they have important implications for your health or the health of your family. If our research uncovers any such information, we will seek approval from Cancer Council Victoria’s Human Research Ethics Committee to contact you, or the members of your family affected by the information, and offer access to the information. You, or your family members, may decline to receive the information.

You may not receive any direct benefits by participating in this study however we hope the results of this research will inform programs to reduce cancer incidence in future generations.

Your participation in this study is voluntary and has no relationship to your continuing medical care. You may withdraw from the study time by contacting us forgottencancers@cancervic.org.au stating whether you wish your information and/or samples to be destroyed or whether we may de-identify them and continue to use them anonymously.