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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