Prioritising access to risk-reducing surgery

We are calling for a nationally consistent approach to prioritising access to prophylactic (preventative or risk-reducing) mastectomy.

A prophylactic bilateral mastectomy is a critical surgical procedure that removes both breasts to prevent the risk of breast cancer by at least 95%. 

Timely access to this risk reducing surgery will help reduce the risk of breast cancer diagnosis. This removes the need for, and cost of, breast cancer treatments including chemotherapy and radiation.

It will also help remove the fear and anxiety that comes with having cancer. 

Background

Some people have at least a 70% chance of being diagnosed with breast cancer due to inherited genetic factors. There are several gene abnormalities or faults that increase a person’s risk of breast cancer.

Despite the undeniable evidence of its life saving potential, accessing a prophylactic mastectomy remains a significant challenge for many Australians. 

While most health services commit to scheduling prophylactic mastectomies within 12 months from the time of waitlisting, some people have waited over five years to have this surgery.

Alternative pathways through the private health system can cost patients as much as $50,000. This is an impossible option for many. 

Nationally, there is no consistent classification across state-based public health services of prophylactic mastectomies for people with inherited high risks of breast cancer.  

There is also no nationally consistent approach to data collection and reporting for people with inherited high risks of breast cancer. This makes it difficult to understand the healthcare needs of people with inherited high risks of breast cancer and inform future health policy to improve outcomes for this group. 

Vicki Durston, BCNA Director of Policy, Advocacy and Support Services, said:

“Knowledge of risk is 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 while waiting.”    

For more than 25 years, BCNA has consistently heard people with inherited high risks of breast cancer talk about their challenges accessing risk reducing options.

Some have said that there is a lack of information and support to effectively make an informed decision about what is best for them. 

BCNA's position on prophylactic mastectomies

It is BCNA’s position that governments prioritise prophylactic mastectomies for people with inherited high risks of breast cancer to meet the urgency of their healthcare needs. 

For many people, timely access to risk-reducing surgery is transformative. It offers the opportunity to reclaim their lives, break cycles of intergenerational trauma, and face the future with confidence. 

Linda's story

Linda waited almost three years for her prophylactic mastectomy. She found out she had a BRCA1 gene mutation in 2019, a month after turning 50. 

Steps you can take now

If you have a known gene mutation and are waiting for surgery, contact us through the Helpline: 1800 500 258. 

If you are undergoing genetic testing, or currently navigating your risk-reducing options including surgery, there are a few things you can do to advocate for yourself: 

• Ask your health professional if you can record your consults – you might not remember everything that is said.
• Bring a support person with you to your appointments. 
• Ask as many questions as you need to better understand what’s happening and what options are available to you – write your questions down in advance. 
• If you’re waiting for an assessment, test results or surgery, ask the surgeon/health service how long you have to wait for and if you have progressed on the waitlist (if applicable). Your GP or other health professional can also ask about this on your behalf.
• It’s okay to ask to see someone else and get a second opinion.
• Take some time to reflect – know what’s really important to you, and what your priorities and boundaries are. 

About the announcement

On 21 November 2024, Federal Minister for Health and Aged Care, The Hon. Mark Butler MP and Shadow Minister for Health and Aged Care, Senator the Hon Anne Ruston endorsed the joint position statement in Canberra.

"BCNA is seen as the gold standard in patient advocacy," said Mark Butler MP, Minister for Health and Aged Care.

The bipartisan support recognises that people with inherited high risks deserve timely and equitable access to risk reducing surgeries. It also acknowledges the urgent need for all levels of government and the healthcare sector to come together to address current health system limitations.

BCNA will leverage this endorsement to advocate at the state level.

The goal is to facilitate a consistent approach to prioritising elective surgery for those at high risk.

Media Release, 21 November 2024: Unacceptable delays of preventative mastectomies create ticking time bombs in women with high genetic risk of breast cancer.

About the AABRCG

AABRCG is a partnership between three leading organisations dedicated to improving access to breast reconstruction services across Australia:

• Breast Surgeons of Australia and New Zealand (BreastSurgANZ)
• Australian Society of Plastic Surgeons (ASPS)
• Breast Cancer Network Australia (BCNA)