Prioritising access to risk reducing surgery
We know that the knowledge of your risk of breast cancer can be empowering but it becomes a feeling of being powerless when forced to spend years on public wait lists for risk reducing surgery. It’s a constant state of fear compounded by lack of transparency regarding timelines and the reality is some will receive a breast cancer diagnosis whilst waiting
Today we’re in Canberra with the Australian Access to Breast Reconstruction Collaborative Group (AABRCG) to launch a joint position statement ‘Prioritising access to risk reducing surgery for people with inherited high risks of breast cancer.'
We're calling for a national, consistent approach to ensure that individuals with inherited genetic risks have timely and equitable access to risk reducing surgeries.
Are you waiting for a prophylactic mastectomy?
To learn more about this issue and to read our position statement, visit our webpage https://www.bcna.org.au/our-impact/prioritising-access-to-risk-reducing-surgery/
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Linda's Story
This is why we do what we do – the experiences of those like Linda living with the uncertainty is real.
BCNA with clinicians are calling for change to prioritise access to risk reducing surgery for people with inherited high risks of breast cancer.
Do you have a story to tell?
If you need help navigating high risk breast cancer you can call BCNA's Helpline on 1800 500 258
Link to Linda's video:
https://youtu.be/XvHFIn0oI-s?si=NI9S4x16JC6Klwnx 1 -
Madeline's Story
When my mum was diagnosed with triple-negative breast cancer in July 2022, she insisted on genetic testing despite it not being deemed essential, given her age and family history. After learning of her PALB2 mutation diagnosis in December 2022, I discovered I had a 50/50 chance of inheriting it, so I immediately began testing. By June 2023, I learned I’d inherited the mutation, which puts me at a 60% risk of developing breast cancer, along with higher risks of pancreatic and ovarian cancers - which I will need to address when I hit menopause.
The second half of 2023 was a whirlwind of counselling appointments, CT and MRI scans, and consultations with surgeons and nurses to determine the best preventive options. With my dedicated (public) medical team’s support, I chose to undergo a prophylactic mastectomy. I was officially put on the surgery waitlist in December 2023, advised that as a “high-risk” patient, I could expect a surgery date in 12-18 months, with only 2-8 weeks’ notice period.
Now, a full year into this wait with no surgery date in sight, I feel stuck in limbo, constantly hoping I don’t develop cancer while I wait for a chance to prevent it. It’s difficult to plan around this indefinite pause, knowing I’ll need to put my life on hold at short notice. This uncertainty adds stress to my personal and professional life, as well as to events that should be joyful milestones.
A shorter wait would give me back control over my health, my life, and my future. It’s frustrating that bureaucracy creates this delay. Being labelled “high-risk” and asked to wait 18 months affects every part of my life – mentally and physically. My breasts feel like a ticking time bomb, and I’m powerless to disarm it. Addressing the risk sooner would also lessen my fear of developing cancer.
While the wait has been long and frustrating, the support from the team at Royal Melbourne Hospital has been remarkable. Their dedication and compassion have been a lifeline. Talking to them, it’s clear they feel the strain of these wait times too – it must be hard to see patients in need and feel unable to help sooner.
I’m choosing a prophylactic mastectomy because I know that annual testing would leave me constantly wondering, “Is this the year?” I’ve ruled out medication for personal reasons. My goal is to avoid breast cancer, period. I don’t want to face chemotherapy or radiation or to see my body and spirit battle through that fight. Nor do I want my friends and family to go through that worry. Given the choice, I’d take a preventive mastectomy every time over a 60% risk of breast cancer. I’m ready to take control of my future—when will the system be ready to let me?
Can you relate to Madeline’s story? Let us know in the comments if you’ve experienced similar feelings while waiting for your prophylactic mastectomy.
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Bec's Story
However, Bec experienced countless challenges trying to access risk reducing surgery through the public system. She was told she would need to wait 2 to 4 years for a prophylactic mastectomy and that because she didn't have cancer, she wasn't a priority. This was an extremely emotional journey, and Bec was very confused and conflicted by it all. She didn't feel supported by the health system, which basically told her that she had to wait to get cancer before she would be treated.
After waiting a few years and not wanting to wait any longer, Bec turned to the private health system for her risk reducing care and treatment in 2023. She and her husband decided to use their superannuation to pay $40,000 for a prophylactic mastectomy via the private health system. She knew she wouldn't have been able to afford the surgery otherwise. Bec's request to access her superannuation fund to have the prophylactic mastectomy was denied twice by her super fund, which did not see the surgery as “essential.” Her request was finally granted after Bec's surgeons provided further evidence about why the prophylactic mastectomy was a "life-saving procedure".
It was a huge relief finally having the funds to have her life-saving procedure, but Bec was shocked to discover that she was taxed $10,000 on the superannuation funds that were released. There were other income tax-related implications, and Bec found herself owing the Australian Tax Office another $3,000. Bec believes these tax debts were unfair because she only had the money to access essential healthcare.
It was scary thinking about if or when Bec would finally have her prophylactic mastectomy. She had two young children to worry about. After navigating the private health system and finally being able to access her superannuation to pay for the surgery, Bec had her prophylactic mastectomy in October 2024. She feels that an enormous weight has been lifted off her shoulders. Even though she paid so much money to access necessary healthcare, she has absolutely no regrets at all. Being proactive about her breast cancer risk was the best decision she's ever made.
Bec thinks it's important that women at a high risk of breast cancer have a lot of support when considering their options for risk reducing care. It is critical to have a person, a team, in your corner, confirming that choosing to have risk reducing interventions like a prophylactic mastectomy is definitely the right thing to do.
Read more about the work BCNA is doing in this space at https://www.bcna.org.au/our-impact/prioritising-access-to-risk-reducing-surgery/
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