Leonie Young, Chair of the Australia and New Zealand Breast Cancer Trials Group’s Consumer Advisory Panel

Leonie Young

I was away visiting family over a long weekend, when I first found a lump in my breast.

I was a young mum at the time and although I knew nothing about breast cancer, deep down I knew something was wrong. I remember feeling the dread and being too scared to even tell my family.

When we arrived back home, I made an appointment to see a doctor and he confirmed all my worst fears.

Since my diagnosis, I have channelled my efforts into becoming a consumer advocate for clinical trials and helping women who face the same anxieties as I did.

For six years, I have been the Chair of the Australia and New Zealand Breast Cancer Trials Group’s (ANZBCTG) Consumer Advisory Panel (CAP).

The CAP was established in 1998 and was the first of its kind in Australia. Made up of seven women from Australia and New Zealand, CAP provides a consumer perspective on the ANZBCTG’s research program and all of our members have had their own unique experience of breast cancer.

We are actively involved in all aspects of clinical trials, from concept and development, through to implementation, recruitment, and follow-up. We review patient information and consent forms and other communications provided to trial participants and this helps to ensure that materials are clear and understandable, so women can make informed decisions.

In my role, I have seen how clinical trials research is making a real difference in the community.

I know that I have benefited from the results of breast cancer clinical trials and that more women are surviving cancer today than ever before.

It has been almost 29 years since I was diagnosed with breast cancer and the fear of it coming back never leaves me.

But through my involvement as a consumer advocate, and working with researchers to find better treatments and prevention strategies, I have seen the improvements that clinical trials have made to the outcomes of women who are diagnosed or at risk of breast cancer.

Women who have experienced breast cancer have played an important role in this research and I am grateful to the ANZBCTG for pioneering and prioritising our involvement.