Making our voices heard

In June this year, BCNA was proud to support one of our Community Liaisons, Marie Pandeloglou, to attend Europa Donna’s first Metastatic Breast Cancer Advocacy Conference in Milan.

Europa Donna is a not-for-profit organisation representing the interests of European women with breast cancer.

The conference brought together 60 metastatic breast cancer advocates from 34 countries around Europe in addition to Canada, Japan, Kuwait, Mexico, Uganda and Australia. The conference aimed to provide a place for breast cancer advocates from around the world to come together and share their experiences, their work and their aspirations.

BCNA asked Marie to share her thoughts on her experience at the conference.

As I look around the room, I see focus in women’s eyes, hear long sighs, and see lots of nodding heads. I realise I have never met these people, and with most, I haven’t even visited their country, but we all share one thing in common – we have either been diagnosed with metastatic breast cancer, or we are here as a voice representing and advocating for people with MBC in our country. Everyone understands the struggle, the advancements and lags in care, being heard and ignored, the good and bad days.

As we go around the room introducing ourselves, it is clear that people’s focus is around advocacy and the importance of shining a spotlight on this disease, and for increased research efforts and funding for better treatments and supports.

Then it is my turn – I feel like ‘Miss Australia’.

As I introduce myself as a fighting woman living with metastatic breast cancer, I hold the Pink Lady tight in my hand, very proud to be representing BCNA from Australia. I speak about our Hope & Hurdles kit, our online support, our telephone counselling program, and our resources and videos supporting and empowering our women from diverse backgrounds.

I also talk about our advocacy agenda to improve access to new cancer drugs, including our campaign around CDK inhibitor drugs, explaining that for Australians like myself with ER positive, HER2 positive metastatic breast cancer, these important drugs remain out of reach.

Throughout the conference, the major themes continue to be the lack of support and feelings of ‘invisibility’ in terms of the breast cancer world – feeling lost in the pink. Advocates from some Europa Donna organisations talk about how they now offer special ‘sub-groups’ for MBC women, such as young women’s groups. Others talk about how they have access to specialised MBC groups through other breast cancer organisations in their countries. Online social networks are highlighted as extremely important for some people with MBC and a means for reducing feelings of isolation and loneliness.

The advocacy/communication skills workshop is small and intimate, which allows for lots of sharing. In some way or another I can relate to everything that is being shared – whether it is about the specific needs of MBC patients, how patient values need to be woven into care, ways to motivate MBC-specific research, or ways to help people live well.

The issues raised from the global advocates are not dissimilar to the challenges Australians living with MBC face – wondering how we are expected to cope with the anxiety, uncertainty, depression, and losing control of our bodies as part of the disease process. There is a great sense of agreement that people need encouragement, support and empowerment, help in dealing with side effects of treatment and help with financial stress.

I must have missed the memo that my breast cancer can come back. It was not what I was expecting and it has changed my life forever. However, being at the conference lights a fire within and inspires me to join the efforts going on all around the world. I will work with BCNA to ensure our voices are heard by educating, demonstrating and advocating for people living with metastatic breast cancer.

BCNA would like to thank Cabrini Health and the Southern Metropolitan Integrated Cancer Services (SMICS) for their support in sponsoring Marie to attend the conference. We were also thrilled to host international expert Professor Fatima Cardoso, one of the key speakers at the Europa Donna conference, at our metastatic breast cancer forum in Melbourne in July. You can watch videos of Professor Cardoso talking with leading Australian oncologist Professor Fran Boyle about the latest metastatic breast cancer treatments and research advances on our website.

BCNA Community Liaison Marie with Europa Donna delegates

Marie (left) at the Metastatic Breast Cancer Advocacy Conference with delegates from Cyprus

Issue 80
Spring 2017