"Did you know that 1 in 2 Australians will be diagnosed with cancer by the age of 85? Over the past 2 to 3 decades, extensive research has been conducted on common cancers, increasing our understanding of their causes and improving survival. Now is the time to focus on the less common cancers, because they account for over half of all cancer deaths in Victoria and we have not forgotten the thousands of lives that are affected by them every year.
Cancer Council Victoria believes it's time to improve our understanding of these cancers and their causes so we can be in a better position to prevent them and support people who get them in the future.
And to do so, we need you"
- Todd Harper, CEO Cancer Council Victoria
Who we need
We would like to invite all Australians over the age of 18 diagnosed with a primary cancer from our list of targeted cancers or other rare cancers to participate in our study.
If eligible, we may also ask you to nominate a family member to take part in the study even if they have not been diagnosed with any of the targeted cancers.
Our initial study is focussed on the causes of less common cancer in adults. If you are a survivor of a childhood cancer, you may still wish to register, and with your permission, we will retain your information for future studies.
Why we need
Every year, nearly 28,000 Victorians are diagnosed with cancer and 11,000 die from it. Less common cancers currently account for over half of all cancer deaths in Victoria - a pattern replicated across the country.
Although, in recent decades, we have made significant progress in understanding common cancers we know little about the causes of many of the less common cancers.
With your help, we want to spread the word and recruit participants for this exciting new project.
Prof Graham Giles
Director of the Cancer Epidemiology Centre.
What we need
You will be required to register and to complete online questionnaires that will collect information about your family cancer history, your health and other personal information related to your lifestyle and occupation. If you prefer to complete a hard-copy questionnaire please contact the research team.
It is difficult to estimate the time it will take you to complete the questionnaires because it will depend on the complexity of your family structure and your work and residential history. On average it will take about an hour to complete the questionnare, depending on the complexity of your family structure, work and residential history. You will not have to do it all in one go. Once registered, you will be able to log in and out at any time and any details you complete will be saved for you to continue completing at your convenience.
You will also be asked to give a saliva sample for DNA analysis. Saliva kits will be sent to you and can be returned to us via reply-paid post. In exceptional circumstances, we may ask you to donate a blood sample, but this would be entirely voluntary and we would contact you directly to ask for your consent.
The Forgotten Cancers Project is an initiative of the Cancer Epidemiology Centre at Cancer Council Victoria.
Please read our FAQs for more information.
Our researchers have prioritised the less common cancers targeted for this project based either on their
poor survival and/or a limited understanding of their causes. For more detailed information on these cancers visit our main site.
I think I'm eligible and want to take part in the research.
We invite all Australians diagnosed with a primary cancer that is one or more of the targeted cancers or other rare cancers to join this study.
If you have any further questions about the study please email email@example.com
Other ways to get involved and show your support:
If the information on this website raises any questions or concerns relating to your cancer, please call the Cancer Council Helpline on 13 11 20. Specialist cancer nurses staff the line Monday to Friday 9.00am-5.00pm.
About our Cancer Council Helpline.
The Cancer Information and Support Service (CISS) is an internationally renowned model of supportive care – a one-stop service where people can access evidence based information and en extensive range of support service, as well as practical advice. The Cancer Council Helpline (13 11 20) is the gateway to these services.
The Helpline is staffed by experienced cancer nurses who are available to provide information about cancer prevention, early detection, treatment and support options relating to any type, or stage, of cancer. They can also provide individualised information and support to people affected by cancer, including family and friends. The Helpline is available by calling 13 11 20, 9.00 am – 5.00 pm (Monday to Friday.)
Our nurses can:
Here are some frequently asked questions about the project. If you have a question we have not
answered below, feel free to contact us at firstname.lastname@example.org
A common cancer refers to one of the five leading cancers - prostate, bowel, breast, lung and melanoma. Together, these cancers account for 60% of all cancer diagnoses in Victoria.
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.
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 email@example.com 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.
If you have further questions about this project, drop us an email and we will endeavour to reply you within five working days.