About this story
Ruth is a Consumer Representative for Breast Cancer Network Australia (BCNA). She shares her lived experience with breast cancer in the hope it will help those diagnosed today receive care that gives them the space to be active participants and decision-makers in their own treatment.
Undergoing cancer treatment can be a profoundly disempowering experience. But it doesn’t need to be that way.
At its worst, the medical system can sideline the views and experiences of patients, which in turn impacts decision-making and outcomes. It can also be silent on the issue of costs, to the detriment of patients who may find themselves severely financially disadvantaged.
Optimal care is the medical system at its best – patient-centred, integrated, financially transparent and with different practitioners working together for the best possible outcomes for patients.
I was diagnosed with Stage 3, HER2+ breast cancer in 2016. At the time I was working as a journalist and juggling motherhood with two small children. I was used to asking tough questions in my work, but now I felt unable to critically test information or to meaningfully engage with my situation. This was both due to the emotional and physical stress, as well as the simple reality that I wasn’t a medical professional.
I needed to get through six rounds of chemo, six weeks of radiotherapy, surgery and 12 months of Herceptin treatment. All of these carried risks, some of them lifelong. I was particularly concerned that I would need a full axillary lymph node clearance – meaning I was at fairly high risk of developing lymphedema during my life.
It was hard at first for me to ask difficult questions about my options, and to voice my anxieties. Looking back on my experience, I benefited greatly from a fantastic multidisciplinary team – including my oncologist and breast surgeon – who worked together on my treatment and who gave me the space and time to work through my questions and options.
I was put in touch with a lymphoedema specialist who was able to talk me through how best to reduce my risk. The oncology nurse at my hospital pointed me to an exercise physiologist, whose program helped me physically and mentally manage through treatment and surgery. My GP at the time helped navigate the healthcare system and kept in touch with the treatment team.
But other parts of the experience were more challenging. I decided to access the private system for treatment which involved out of pocket costs, and hard as it was, I pushed myself to ask the questions on the few occasions when bills or quotes seemed excessive. At one point, just asking the question resulted in a significant reduction of a medical bill related to my treatment. While this was a good outcome for me, it left me shaken by the financial toll my family almost, needlessly, suffered - and greatly concerned for other patients.
At other times I struggled with processes and systems that were not receptive or flexible to the needs of cancer patients. One hospital insisted that I travel across the city to receive crucial genetic test results in person, despite the exhaustion and pain I was experiencing from chemo. But once I got there, they informed me that the results weren’t back yet, and they would just deliver them over the phone as I had originally asked.
While a relatively minor event to the hospital staff, this experience left me incredibly distressed, disempowered and angry. Waiting on test results is one of the hardest parts of a cancer journey. I will always be grateful to my breast surgeon who made sure to ring me late on a Friday afternoon with “good news” from tests – a empathetic gesture that made me feel truly supported.
Cancer patients deal with so many parts of the medical system, all of which have varying practices, priorities and adherence to the principles of patient-based care. That feeling of disempowerment can be suffocating and is difficult to shake.
Transparency, empathy and flexibility don’t cost much but they make a profound impact on the patient and their experience
All patients deserve to receive optimal care that prioritises them – that gives them space to be active participants and decision-makers in their own treatment.
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Let’s be Upfront about navigating a breast cancer diagnosis as an Aboriginal or Torres Strait Islander.
Let’s be upfront about death, dying and mortality.
Let’s be upfront about pain, side effects and palliative care.
Let’s be upfront about different perspectives during and beyond a breast cancer diagnosis.
Let’s be upfront about behavioural changes.
Let’s be upfront about life after cancer treatment.
*This article does not provide medical advice and is intended for informational purposes only.
Please consult a medical professional or healthcare provider if you're seeking medical advice, diagnoses, or treatment.