I am interested in
I am interested in inherited cancer resources
Welcome to our Resources Centre. Here you can find information and tools to help support you further when managing your risk or navigating your inherited cancer pathway.
Cancer
Understanding your treatment
plan
What to expect after a cancer diagnosis
Common cancer treatment options
Cancer treatment tips and tricks
Metastatic cancer: Questions to ask your treatment team
Tumour test: Questions to ask your doctor
Questions to ask your breast surgeon
Questions to ask your gynaecologist surgeon
Cancer treatment and fertility
Family
Mapping your family history
How to start a conversation about your family health history
Discussing your genetic risk with children
Sharing your genetic cancer risk with family
Fertility
Cancer treatment and fertility
Finances
Finances: Insurance for people with familial cancer risk
Genetics
Questions to ask your genetic counsellor
Mapping your family health
history
Discussing your genetic risk with children
Sharing your genetic cancer risk with family
Menopause
Menopause
Surgery
Questions to ask your breast surgeon
Questions to ask your gynaecologist surgeon
Pre-surgery tips
Packing your hospital bag for surgery
Post-surgery tips
I am interested in research and trials
Research Projects
At Inherited Cancers Australia we are support many research projects that aim to improve treatments, options and support for families with inherited cancer risk. If you would like to get involved, please have a look below and reach out to the study contacts for more information:
EmCOG Study
This study is investigating whether the removal of ovaries before natural menopause is associated with changes to concentration and memory.
Eligibility criteria
This study is for women in Australia who are under 45 years old and are at high risk for ovarian cancer. You might be eligible if you are planning to have a bilateral salpingo-oophorectomy (BSO) within the next 12 months, or if you have already had a BSO in the past 12 months.
Location
This study is conducted online via videoconferencing.
Contact
tumaprc-earlymenopauseandcognition@manas.edu
(03) 9076 5034
Elevated Risk of Ovarian Cancer (EROC) Biobank Project
This study (for Sydney based participants only) is developing a blood and clinical database from people with increased risk of developing ovarian cancer. People who are considering removing their ovaries because they have a gene mutation associated with breast or ovarian cancer or they have a family history of breast or ovarian cancer, can participate. Participants will be provided with detailed information and if consent is given, the clinical team will organise a time to collect a 45mL blood sample. This blood can be used by researchers to search for new biomarkers that might be useful for improving diagnostics (eg to support development of an early detection test for ovarian cancer). The blood and data will be used for future research.
Eligibility criteria
Participants must meet the follow criteria to participate:
- Considering risk-reducing gynaecological surgery; and have
- Family history of hereditary breast or ovarian cancer; or
- Germline mutations in genes associated with breast or ovarian cancer
Location
You can only participate in this research if your surgery is taking place in Sydney.
Website
https://www.gyncancerresearch.org/the-eroc-biobank
Contact
earlydetection@unsw.edu.au
Shaping the Future of Menopause Research Survey
The Menopause Priority Setting Partnership (MAPS) has been created to find out what questions about menopause need more research. By listening to both people who have experienced menopause and healthcare professionals, MAPS will determine the Top 10 most important research priorities for the future.
Eligibility criteria
Participants must meet the follow criteria to participate:
- Lived experience of menopause
- Healthcare professionals that work with menopause patients
Location
This is a global study, survey is online.
The full day face-to-face workshop details:
Where: Melbourne CBD
When: 18th October 2024
Website
https://uchicago.co1.qualtrics.com/jfe/form/SV_0Tyg9DgkzkGi8oC
Contact
MAPS-UOM@unimelb.edu.au
Medicines Access Programs
Clinical Trials
Clinical trials play a crucial role in advancing cancer research and treatment. Clinical trials are research studies that test new treatments or interventions to advance further and improve cancer care. These treatments may include targeted therapies, immunotherapies, or combination approaches that aim to slow the spread of cancer or even shrink metastatic lesions.
Before participating in a clinical trial, it's essential to consider any potential risks and discuss these and your participation in any trial with your medical team. You will need to provide informed consent, which means you fully understand the trial's purpose, procedures, and potential risks.
Please see below list of current open trials:
The BRCA-P Clinical Trials
The BRCA-P study will explore whether the drug Denosumab is a safe and effective method for preventing breast cancer in women with a BRCA1 mutation.
Eligibility criteria
If you are a woman aged 25 to 55 with a confirmed BRCA1 mutation, no current or past breast cancer diagnosis, and you are not planning to have or have not yet undergone surgery to remove both breasts, you may be eligible for this trial.
Location
The trial is open at 15 hospitals around Australia. Please see below website to find out exact locations and more information.
Website
https://www.breastcancertrials.org.au/trials/brca-p/
Contact
Phone: 1800 777 253
Primo Trials
PRiMo is a trial focused on using polygenic risk scores in clinical practice to determine the best way to identify high-risk women and personalise breast cancer risk management. A polygenic risk score represents the total number of genetic variants an individual has, which helps to assess their risk of developing a particular disease. This trial includes national recruitment through the network of Australian Familial Cancer Centres.
Eligibility criteria
The trial will be available to women who, having been referred to a participating Familial Cancer Clinic in Australia, are seeking predictive testing for a pathogenic variant in a high or moderate risk breast (and/or ovarian) cancer-associated gene (such as BRCA1, BRCA2, PALB2, CHEK2, ATM, RAD51C, RAD51D) that was previously identified in a genetic relative.
Location
The trial is located nationwide. Please see below website for exact locations that are included.
Contact
primo@petermac.org
(03) 8559 6190
Tuba WISP Trials
The TUBA-WISP II study is investigating if having a salpingectomy (removal of the fallopian tubes) followed by a delayed oophorectomy (removal of the ovaries) is a safe alternative to the standard risk-reducing surgery (both salpingectomy and oophorectomy) for women with a high inherited risk of ovarian cancer.
Eligibility criteria
To participate in this study, you need to meet the following criteria:
- Be a woman with a genetic mutation in one of these genes: BRCA1, BRCA2, BRIP1, RAD51C, RAD51D, or PALB2.
- Be within the specific age ranges: 24-40 for BRCA1, 25-45 for BRCA2, and 25-50 for BRIP1, RAD51C, or PALB2.
- Have completed childbearing.
- Be premenopausal and have at least one fallopian tube.
- You may have had non-ovarian cancer before, but you should not have it currently and must have completed any treatment.
- Be willing to sign an informed consent form.
- If you have had a salpingectomy, you should plan to wait at least two years before having an oophorectomy.
Location
This is a worldwide trial, please see below website for more information on this and the locations participating.
Website
https://www.tuba-wisp.org/
Contact
tuba-wisp@radboudumc.nl
Other ways of finding clinical trials:
- Your hospital or Medical Team – Your medical oncologist will know about any relevant studies that might suit you and your type of cancer. If you want to find or participate in a clinical trial, this can be the best place to start.
- Australian New Zealand Clinical Trials Registry (ANZCTR) – A national database of clinical trials maintained by the Government. You can search for cancer-related trials on their website
- Cancer Council Australia – A leading cancer research organisation that often has information about clinical trials on its website.
- Australian Rare Cancer Portal – An online portal aimed at healthcare providers to improve outcomes for those with rare cancers.
- Australian Cancer Trials – Government database of the latest clinical trials in cancer care.
- Breast Cancer Trials – Clinical trial research focused on finding better treatments for people affected by breast cancer.
- Australia and New Zealand Urogenital and Prostate Cancer Trials Group – Clinical Trial research focused on finding better treatments for people affected by urogenital and prostate cancer.
- Australia New Zealand Gynaecological Oncology Group (ANZGOG) – National gynaecological cancer clinical trials organisation for Australia and New Zealand.
- ClinTrial Refer – Platform and app that allows you to search for clinical trials that are actively recruiting patients.
What is Ashkenazi Jewish ancestry risk?
Ashkenazi Jewish people make up about 80% of the world’s Jewish population. People with Ashkenazi Jewish ancestry have a 1 in 40 chance of carrying a mutation in the BRCA gene that can put them at high risk of developing breast, ovarian, prostate or other cancers. This is much higher than the general population’s risk of 1 in 400 chance of carrying a gene mutation that causes cancer.
Both men and women with the gene mutation can pass these changed genes to their children.
If you are of Ashkenazi Jewish descent, it is a good idea to talk with your family about their health and cancer history. If you or a family member have been diagnosed with breast, ovarian or prostate cancer, this genetic information can help you and your family make important decisions about how to manage any cancer risk. This includes:
- How to lower your chances of getting cancer
- What sort of check-ups or screening can help find cancer early
- What this means for children you might have.
Hear more from our Ashkenazi Jewish community
Genetic testing
After you have investigated your family health history, you may want to talk to your general practitioner (GP) about genetic testing to identify your cancer risk. See the Genetic testing page for more information.
Have a question relating to your family history?
You are not alone
Inherited Cancers Australia has many community members with an Ashkenazi Jewish background. Join our online support groups where you can ask questions and get advice from people who share this risk.
For more advice and support, Sharsheret is an American based organisation that provides cancer support specifically for the Jewish community.
I am interested in what support you have for healthcare professionals
More information on this page will be coming soon. If you have any questions or need further information please contact robyn@inheritedcancers.org.au
