A Legacy Long Lunch to support those living with inherited cancer risk 

Posted on 30 April, 2025

A cancer diagnosis is usually an unexpected event, turning an otherwise ordinary day into the first day of a never to be forgotten journey.

But what if you expect to one day be diagnosed with cancer?

Inherited Cancer Australia (ICA), formerly known as Pink Hope, is an organisation which supports and advocates for an estimated one in 400 Australians whose genetic makeup puts them at a significantly higher risk of developing cancer over their lifetimes.

Women such as Robyn Smith, who is ICA’s Programs and Advocacy Manager, and who lives with the BRCA2 gene, having undergone genetic testing after losing her mother to ovarian cancer at 66 and her grandmother to breast cancer at 53.

Robyn’s mother was genetically tested during her treatment and confirmed to carry the BRCA2. All members of Robyn’s family were then able to access free genetic testing as a result and seven from 11 decendents have been confirmed to carry the gene.

“Since finding out, I’ve had my breasts, ovaries and fallopian tubes removed to manage my cancer risk. Like many other high-risk people, I went into medically induced menopause in my early 40s. Since finding out about my BRCA2 status, two other people in my family have been diagnosed with cancer (my cousin and my uncle). I now think about the next generation in my family – of all the things you want to pass onto your children, high cancer risk is not one of them.”

ICA’s role is to empower all Australians to understand and manage their inherited cancer risk by educating them about their health history, providing evidence-based resources, and connecting them to a supportive community.

The organisation receives no Federal Government funding and relies on grants, fundraising and donations. Yet it is difficult to access grants when you are an organisation that focuses on cancer prevention when the demand is high among people with actual cancer diagnoses.

“At times, we are forgotten. We are not (yet) sick but our cancer risk is so high that it is recommended we remove parts of our body. Often high-risk people have the same experience as people with cancer (ie a mastectomy without treatment),” says Robyn.

“Inherited cancer risk can be sneaky, it can be hidden in families who don’t openly discuss family health history. Most of the time, we can’t control it and there can be feelings of guilt and worry for the next generation. Even after having risk reducing surgery, cancer risk looms with cancers you can’t screen for such as pancreatic or peritoneal cancer.”

There is also a huge psychological impact for those who live under the shadow of a gene mutation such as BRCA1/2, Lynch syndrome, PALB2, CHEK2 and many others.

“There are people in our community with cancer and those without but nearly everyone in our community has a significant family history of cancer and has experienced cancer and cancer risk throughout generations of their family. These families are disadvantaged by the one thing they can’t control – their genes. These families have emotional and financial trauma across many generations.”

Later this month, Canberrans will be invited to a Legacy Long Lunch hosted by ICA to learn more about inherited cancers and to connect with community affected by them.

Last year’s High Tea. This year’s lunch is aimed at supporting more men who also live with inherited cancer risk

Robyn says the event is an empowering and uplifting family-style lunch held at Realm Hotel and guests will hear from a panel of people with lived experience of inherited cancer risk as well as enjoying food and entertainment and meeting new friends.

“We want people to come together and start talking about family health history – because it might change your life. We’ve changed from a more traditionally ‘female’ high tea, to try to attract more men to this event. We need to include men in these conversations because gene mutations are carried and passed on by both men and women. We want to raise awareness that gene mutations don’t just affect women, this is family business.”

Robyn also noted the ICA community was younger than in other cancer organisations and the majority who live with inherited cancer knowledge are under 55.

“People in the general population understand cancer but they don’t understand inherited cancer risk. Our community offers a safe space for people who are thinking about undertaking genetic testing or those with a significant family history of cancer. Whether it’s providing evidence-based information to empower individuals to make life-changing decisions, offering personalised support and connection through our inherited cancer support service, our peer mentors and private groups, or hosting community events to reduce the isolation often experienced, ICA helps,” says Robyn.

“We address not only the practical aspects of managing cancer risk but also the emotional challenges, including family dynamics and the possibility of passing on a predisposition to future generations.”

Photography by Jodi Shepherd of Hot Shots