Cancer Challenge of the Year 2013: November 2013 update

1 November 2013
TCRN CCY 13: Family Matters! November 2013 Update

Cancer Challenge of the Year 2013: November 2013 update

Family Matters! Dissemination of genetic information about breast and ovarian cancer genes within families to prevent cancers.

A communication tool for families living with cancer-causing gene mutations is the focus of a new research project being funded by the Translational Cancer Research Network (TCRN) Cancer Challenge of the Year (2013) initiative.

Led by a team at the Prince of Wales Hospital, the Family Matters project seeks to assist individual patients who have been identified as carriers of the BRCA1 or BRCA2 gene mutation to share information with family members whose health may also be at risk. This gene mutation is responsible for 5 per cent of all breast cancers, and results in a significant increase in risk for breast and ovarian cancers for women, as well as increased risk of breast cancer for men.

 “The public health benefit for cancer prevention depends on disseminating appropriate information to those at risk,” says Dr Kathy Tucker, the project lead and Director of the Hereditary Cancer Clinic at the Prince of Wales Hospital.

“Given evidence that survival to age 70 can be improved from 53% to 79% for BRCA1 mutation carriers who are appropriately managed, this is a significant public health issue.”

Currently, only about two in 10 family members are informed of their risk when a close relative is identified as a carrier. Of those who are notified, only a small number undergo genetic testing in order to measure their personal risk.

“Often, when we identify new cases of gene mutations within a family, the information that needs to be passed along to at-risk relatives often doesn’t get through, or when it does get through, it’s not acted upon,” Tucker says.

The reasons for this are complex; some patients experience extreme anxiety about their health or fear having to share bad news with their family members, while others may not understand enough about their condition to communicate with family members effectively.

The Family Matters tool will guide these patients to develop a tailored action plan for family notification, in consultation with a genetic counsellor or general practitioner, with the aim of increasing the number of family notifications and those presenting for genetic testing. It is built on a promising model- a pilot of a similar family communication tool at Wollongong Hospital resulted in 90% of family members being effectively notified of their risk, up from just above 0% when the project began. 

 “It’s a combination of going through each person in the family that might be at risk and having an action plan for how you might get into contact with the person,” Tucker says.

“We might go through the family and we’ll talk about each person individually and we’ll work out an action plan. It’s moving from the message of, ‘You have to get in touch with people’ to working out how and when you’ll be able to talk to Auntie Flo, who is the best person to contact Auntie Flo, are there any problems that you have in talking with Auntie Flo that are going to be a barrier, and how can we get around those? So it’s really very action-oriented.”

The results are expected to be relevant to families carrying cancer gene mutations, as well as other non-cancer-related conditions that are the result of genetic mutations, such as inherited cardiomyopathies.

The Cancer Challenge of the Year is an annual TCRN-funded research initiative. It provides up to $100,000 to support up to two translational research projects that seek to transform contemporary approaches to cancer treatment. The Family Matters project is one of two projects funded in 2013, the 2014 funding round will commence  later this year.

 To read more about this project, click here