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Nikki Neofitou was trying to do the right thing to keep herself alive, but the hospital system let her down.
Key points:
- Nikki Neofitou was diagnosed with breast cancer a fortnight before she was due to have preventative surgery
- The surgery had been delayed because it was classed as non-urgent
- Now she and others want a national approach that rates such surgery as a higher priority
At the age of 23, Ms Neofitou made the decision to undergo preventative breast cancer surgery, but it was delayed and, while waiting, she was diagnosed with cancer.
She is a carrier of the breast cancer 1 (BRCA1) gene mutation, which means she had up to a 72 per cent chance of developing breast cancer.
Ms Neofitou had watched her Mum fight cancer and wanted to avoid the same experience for herself.
"I found out I had the BRCA mutation when I was 20 years old," she said.
"After having watched my Mum go through chemotherapy and radiotherapy, I knew that wasn't a future I wanted for myself, so I wanted to be able take control of my future and change the course of my life."
Ms Neofitou made the decision to undergo a prophylactic mastectomy — but her surgery, which is classed as elective, got pushed back by 10 months.
"I felt really empowered when I was able to get a date for my surgery. I felt like I was being able to change the course of my life and, when I found out that my surgery would be delayed, I was absolutely devastated and it left me feeling like I was a ticking time bomb in the medical system," Ms Neofitou said.
Just two weeks before the surgery, she was told she had triple negative breast cancer.
"Hearing those words and finding myself in the same spot that my Mum did 20 years ago was so hard for me to understand when I had been so proactive in making the right decisions and taking control of my life," she said.
Long surgery waits could be leading to more cancer diagnoses
Ms Neofitou was one of 1,500 Australians diagnosed with hereditary breast cancer in the past 12 months.
Pink Hope — a preventative health hub that informs at-risk women of breast and ovarian cancer — said the figure could be lower if surgery wait times were reduced.
The organisation's chief executive, Sarah Powell, said state and federal governments needed to be aware that Ms Neofitou's story wasn't a one-off.
"I've been made aware of 10 women across Australia [who] have been in the same situation, but I believe that's only since October last year, so there could potentially be more," she said.
Wait times for prophylactic mastectomies vary between the states and there is no consistent approach to how the surgery is categorised.
Many women who inherit a harmful variant of BRCA1 or BRCA2 gene mutation undergo surgery to remove their breasts or ovaries, due to their high risk of developing cancer.
Currently there are three tiers of elective surgeries.
Category one is defined as urgent and it is recommended that surgery is carried out within 30 days, category two is defined as semi-urgent and should be completed within 90 days, while category three is classed as non-urgent and wait times can be up to a year.
While the responsibility lies with state governments, Pink Hope wants the federal government to coordinate a nationally consistent approach, so that the surgery is categorised as type two.
"These women are trying to stop themselves getting cancer and we are seeing women who aren't able to get the surgery straight away [who are] getting cancer," Ms Powell said.
Pink Hope and Ms Neofitou today met with politicians in Canberra to push their case.
Ms Neofitou said change was essential to ensure women had the same access to care across the country.
"People with the BRCA mutation, we are still faced with the same challenges whether we are in Victoria or Queensland. We need this national regulation around surgeries to be able to make decisions to prevent us from becoming people with cancer," she said.
Speaking in Victoria, where Ms Neofitou's surgery was delayed, Premier Daniel Andrews said the state government was doing all it could to avoid similar situations in the future.
"Of course we are concerned. There has been a lot of delay, a lot of unavoidable delay, as a result of the one-in-100-year pandemic event," he said.
"That is why we have got billions of dollars in COVID catch-up funding. It's why we have bought private hospitals and turned them into public elective surgery centres."
'Invisible' gaps in genetic testing data leave people unsupported
Ms Powell said the organisation was also pushing for a national data base for genetic testing in breast cancer.
"If you don't have data to understand, who's having genetic testing, what their results were, how many people have got a genetic mutation, [then] these people are invisible," Ms Powell said.
"We can't plan what support and services and programs they need, if you don't know who they are, where they live."
She also raised concerns about a shortage of clinical geneticists who could test people for hereditary breast cancer in the years ahead.
"So many people are trying to get into family cancer clinics, and the waits are huge to get genetic testing.
"If we already know that a lot of these genetic services are going to be losing people in the next 10 years [through] retirement, but they don't have those people coming through to replace them, that's a bit scary."
For Ms Neofitou, she is looking forward to celebrating her 25th birthday this weekend after recently finishing her treatment.
"The last few months have been the hardest months of my life," she said.
"I have just finished treatment last Tuesday so I have been able to close that chapter of my life and now I am just starting to navigate my way through moving forward and living a life after cancer."