About this story
Lisa is a Consumer Representative for Breast Cancer Network Australia (BCNA). When Lisa was diagnosed with breast cancer in 2012, she experienced high out of pocket costs and her family quickly found themselves in financial difficulty.
As a member of BCNA's Financial Impact Working Group, she is passionate about helping people diagnosed with breast cancer today understand how to navigate the costs of their treatment and care.
I was in what I thought was good health when I was diagnosed with early breast cancer in 2012. At that time, I had two children in primary school, and I was working full time. We had a mortgage and were living on a reasonable budget, but that all came to a halt quickly.
I took leave from work to focus my emotional and physical energy on getting through treatment – surgeries, six months of chemotherapy and targeted Herceptin, plus five weeks of radiotherapy was quite taxing on my body. I savoured the good days when I could enjoy time with my kids, and on the other days I just focused on getting through as best I could.
From the beginning I told myself how lucky I was to be in Australia, in a city with access to great hospitals and medical professionals. My GP referral set me on the path to a great group of doctors who case managed my treatment. My breast surgeon partnered with a breast care nurse who helped translate and talk through some medical details, and my oncologist worked across public and private health systems and knew of an international trial for the breast cancer that I had. I wholeheartedly signed up for it.
I accessed all my treatment through the public system, except for my surgery, which I did privately. It wasn’t clear to me what the out-of-pocket costs were going to be as a private patient or what additional costs I was about to face throughout the course of my two years of treatment. The conversations about costs were minimal and I was so naïve to the financial costs of treatment as a patient across both the public and private health systems.
As the primary wage earner for the family, with outdated income protection insurance, our family finances took an immediate dive. We churned through our savings on living costs. On top of that, the out-of-pocket costs over the course of my treatment were upwards of $20,000 which included specialist fees, medical tests, scans, lymphoedema sleeves, gloves and skin creams, head scarves, hats, wigs, and transport costs getting to and from all my appointments. There were a lot of extra costs no one talks about that put extra stress on us at a time when our family income had halved.
The stress from the financial situation added to the trauma of receiving a breast cancer diagnosis. It impacted my ability to think clearly and make the right decisions for me at a really difficult time
The biggest impact on me was the concern about not being able to provide for the family, and not knowing how long I was going to be in this situation for. We didn't have the money to pay bills or our mortgage, let alone anything extra. When we needed support, my parents stepped in and used their savings to help us live. I’m so appreciative to them for providing the financial support because not everyone has that support available to them.
About 11 months after diagnosis, I was still going through treatment. I felt like I was slowly dragging myself up from the ground, feeling very vulnerable but ready to return to what I had known and enjoyed. As an Human Resources manager with a good work history and good colleagues, I was looking forward to returning. It signals a significant, positive step in recovery and returning to normal life. Unfortunately, returning in a part time capacity wasn’t supported by my manager, so my return to work was put off until I could work fulltime. Unfortunately, when I was ready for that the position was made redundant.
There’s no one-size-fits-all when it comes to financial considerations and consent. Across Australia there are so many variables people face that affect their ability to access equal care, so it’s important to encourage open conversation about the financial implications of treatment. Knowing upfront what to expect can ease some of the stress and give people time to access the relevant resources and support.
Health professionals are best placed to discuss treatment options with you based on your individual health circumstances. Ideally, they’ll guide you towards the best options available to you so you can assess what’s the right treatment for you, at the right time, in the right way.
A terrific source of information is BCNA’s Financial Fact Sheet. It lists various questions and answers about financial considerations and can point you in the right direction for further follow up. BCNA’s factsheets reflect the experiences and voices of a collective, which is so helpful when you’re trying to wrap your head around the many aspects of a breast cancer diagnosis.
I’m on BCNA’s Financial Impact Working Group which looks into the costs people face when going through breast cancer treatment. We look at how we can support people now as well as what advocacy might be needed systemically through the medical system.
If we can normalise talking about the financial impact of breast cancer, it will help people know it's a reasonable concern to have. It's reasonable to have concerns about what it might mean for you on top of your health considerations, and it will make a difference to people's out-of-pocket costs, and therefore the experience they have going through breast cancer treatment.
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