The power of BCNA’s consumer voice at COSA

BCNA’s internationally recognised Seat at the Table (SATT) program helps ensure that consumer voice is central in achieving better care, treatment and support for those affected by breast cancer.

The power of BCNA’s consumer voice took centre stage across four presentations by four of BCNA’s trained Consumer Representatives (CRs) at the Clinical Oncology Society of Australia’s (COSA) 50th Annual Scientific Meeting in Melbourne earlier this month.

CRs Jodie Lydeker, Naveena Nekkalapudi, Victoria Gurvich and Andrea Smith shared their personal experiences from a patient’s point of view.

Here is a taste of their presentations:

Jodie Lydeker - Finding the new normal

In her session, Living Well with and Beyond Breast Cancer, Jodie presented a lived experience view of breast cancer beyond the treatment bubble where navigating fear, loss, grief and confusion becomes a necessary pathway to recovery along with managing the impact of debilitating side effects.

Session attendees were shown a GIF of a dumpster fire floating down a river.

"This so perfectly describes the kaleidoscope of challenges for a patient and their families," she said.

"But these challenges often get worse at the time when active treatment ceases. For people with advanced disease, these challenges endure.

"Sometimes the side effects are worse than the cancer."
Jodie said the context of optimal care in health service delivery needs to focus on the whole person rather than the disease.

"In the context of living well, people impacted by cancer need to be supported to redefine the quality of their life rather than being defined by their prognosis," she said.

"Cancer is not just about a medical model - treat the disease, treat the symptoms and off you go.

"It’s also a lot about the emotional impacts of cancer diagnosis treatment and whatever happens after that."

Naveena Nekkalapudi - Challenging assumptions and norms

In her session, Sexuality and Sexual Health, Naveena talked about maintaining a patient’s quality of life during and post treatment.

And she spoke about the importance of health professionals taking a patient's sexual health and wellbeing into consideration as part of any treatment plan.

One suggestion was to integrate sexologists or sexual therapist in the treatment team.

"Patients find it difficult to discuss sex and sexuality as it remains a taboo subject for many individuals - especially in a multicultural society like Australia," she said.

"Often patients privately muse about their symptoms and often dismiss them, thinking they alone face these issues.

"In addition, they receive mixed messages from health professionals, family and friends, peers, and other sources about the options available to alleviate the severity of the symptoms."

Session attendees were shown photos of Naveena before, during and after her cancer diagnosis.

"I thought I would go back to looking like the pre photos. I thought that would be my return to health. It’s a common feeling many breast cancer patients have," she said.

"The priority of the patient - as well as the clinician - when you first sit in front to them is about saving your life. And I’m very grateful for that. But health professionals have to start thinking about quality of life, how we feel and the long-term impacts of treatment and how horrible it can be to live with these conditions."

Victoria Gurvich

When Victoria was diagnosed with breast cancer, she started keeping a diary. As a former journalist that was the natural thing to do.

Recollections from her diary was the scaffolding of her session on her lived experience having a breast reconstruction after a mastectomy.

Attendees to the session Breast Reconstruction in 2023, heard Victoria outline her fears, and some happier outcomes during her ‘journey’ with breast cancer, from the shock of diagnosis through to reconstruction.

She said people diagnosed with breast cancer require information that is accurate, evidence-based and timely.

"This is true for breast reconstruction, where there are also disparities in access and waiting times in different parts of the country and due to cost factors," she said.

She said patients were hungry for information from their treating team, including answers to: How many surgeries will I need? in what order will they take place? What is a tissue expander? How do I navigate confronting conversations with young children? How do I make sense of medical appointments that feel like a blur, whilst managing extreme fatigue? "Am I back to normal now?

Her session ends with a Fast Forward moment from diagnosis to today, as theorises how different her experience would have been if she had been provided with more information and deeper and honest conversations with her treatment team on what to expect.

Andrea Smith

Andrea Smith, who co-authored BCNA’s 2022 Issues Paper, Making Metastatic Breast Cancer Count, co-chaired a session on metastatic cancer.

Alongside co-chair Dr Belinda Yeo, Andrea’s session featured Dr Shom Goel, Stephen Luen, Kerry Patford and Steven David speaking on a variety of topics relating to metastatic cancer, from pipeline drugs, the genomic revolution, metastatic breast care nurses, and future direction for oligometastatic breast cancer.

Wherever those with a lived experience of cancer can sit alongside clinicians and researchers, we know that outcomes will improve. BCNA sincerely thanks the organisers of the COSA 50th ASM for allowing consumers a seat at the table for this year’s conference.

Find out more about how we engage with customers on our Working with consumers page.