Women’s experiences of breast reconstruction revealed in latest BCNA report

Earlier this year BCNA reached out to our network to invite members to share their experience of breast reconstruction.

This survey is part of the work we committed to act on to address the unacceptable gaps in the treatment and care of those diagnosed with breast cancer identified in our State of the Nation report. This included a disparity in waiting times, out-of-pocket expenses, and access to information, treatment and care.

Thank you to the 3,350 women who responded to our survey about reconstruction. Your experiences provide a current and comprehensive snapshot of what women around Australia are experiencing when they opt to have a reconstruction after a mastectomy.

Having a reconstruction after mastectomy is an individual choice, and BCNA wants all women to be able to make an informed decision about what’s right for them. Those who choose to have a reconstruction should expect equitable access to the procedure, no matter who they are or where they live. However, we know that this is not the case. Key findings in BCNA’s Breast Reconstruction in Australia 2021 report show:

  • breast reconstruction is more common for younger women (under 50), for those living in more socio-economically advantaged areas, and those living in metropolitan areas
  • too many women across Australia are not getting the right information at the right time to make an informed decision about their reconstruction options
  • those in the public health system are more likely to experience unacceptable delays for their breast reconstruction surgery compared to women going privately
  • out-of-pocket costs vary considerably for women going through the private health system, with around 20 per cent of respondents facing out-of-pocket costs of more than $10,000
  • some women in regional and rural areas experience longer wait times and higher costs than those in major cities.

The report outlines BCNA’s recommendations to address these disparities and ensure women have access to timely, affordable and equitable breast cancer treatment that meets their individual needs. You can read the report in full here.

One of the survey respondents, Jaime, lives in Queensland and was diagnosed with early breast cancer in January 2020. She had her surgery through the private system and was disappointed she did not have access to a Breast Care Nurse or additional services such as counselling, which she had to pay for herself. She felt unsupported and alone.

Her access to surgery was affected by COVID-19 as well. It was cancelled because of a COVID-19 case in her doctor’s office, adding to the uncertainty and stress she was already feeling.

Jaime was out of pocket approximately $12,000. When she received the quote, she started to question her decision.

‘I put off my surgery while I weighed up the cost,’ she says.

She wants to see the system changed for those having treatment as private patients.

‘I was shocked that the private system doesn’t offer much support beyond the surgery itself. There was no wholistic approach,’ she says. ‘I didn’t have access to a Breast Care Nurse and had to source and pay for additional services, such as a physiotherapist and counsellor. I think there should be more assistance especially for the people who are not going through the public system as we are trying to free up the public system for those who need it more.’

She says one benefit of being in the private system was her surgery and reconstruction happened relatively quickly, for which she is grateful.

‘I have heard of women waiting up to seven years for their reconstruction surgery. What sort of impact is that having on them and their families, living in limbo that whole time?’ she says.

BCNA is calling on the federal and state governments to respond to our proposed recommendations and we look forward to sharing their response. This includes providing greater transparency of elective surgery wait times and out-of-pocket costs for breast reconstruction.

This work forms part of BCNA’s broader advocacy strategy, which focuses on the financial impact of breast cancer, equitable access to optimal care, and living well with and beyond breast cancer.

If you’d like more information about breast reconstruction, BCNA has a range of resources for you. You can:

Issue 89
Spring 2021