A Brisbane mum who spent years searching for answers to her ‘random’ and worsening symptoms has revealed the devastating moment she finally learned she had one of the rarest cancers in the world.
Ashleigh Smith, 36, had been living with unexplained pain, exhaustion, and strange health issues for more than six years before a scan in July 2025 changed everything.
What she thought might be swollen lymph nodes turned out to be bilateral carotid body tumours which had quietly been growing for decades – a cancer so rare fewer than 40 cases like hers have ever been recorded.
By the time doctors confirmed the diagnosis, it had already spread.
But Ashleigh had been unravelling for years.
She went from specialist to specialist – GPs, physiotherapists, an osteopath, an exercise physiologist, a naturopath, a dietitian – desperately trying to understand why her body no longer felt like her own.
‘I’d had blood tests, X-rays… everything. Nothing was showing, I just felt so unwell,’ she told the Daily Mail.
The symptoms were vague, but relentless. She was constantly sick with flus and colds and lived with deep, unexplainable pain.
A Brisbane mum who spent years searching for answers to her ‘random’ and worsening symptoms has revealed the devastating moment she finally learned she had one of the rarest cancers in the world
Ashleigh Smith, 36, had been living with unexplained pain, exhaustion, and strange health issues for more than six years before a scan in July 2025 changed everything
What the mum thought might be swollen lymph nodes turned out to be bilateral carotid body tumours which had quietly been growing for decades – a cancer so rare fewer than 40 cases like hers have ever been recorded
Even eating became difficult – and the mum described a strange, lingering sensation she described as ‘bread pain’, like something stuck in her throat.
At one point, she developed pancreatitis out of nowhere, followed by gastritis and chronic inflammation.
Ashleigh even got CT scans of her abdomen – but the affected area was too low to reveal the tumours in her throat and back.
And eventually, after every test coming back clean, the mum stopped investigating.
‘After seeing so many specialists, I just told myself… this must just be my life.’
Soon, her world began to shrink.
‘I stopped going out. My husband and I used to go for walks every weekend, but we stopped doing that. No more social events, then I stopped doing more than one thing a weekend.
‘I’d do my meal planning on Saturday and grocery shopping on Sunday and that was my whole weekend. I was just exhausted and in pain all the time.’
‘I’d do my meal planning on Saturday and grocery shopping on Sunday and that was my whole weekend. I was just exhausted and in pain all the time,’ Ashleigh said
Ashleigh went from specialist to specialist – GPs, physiotherapists, an osteopath, an exercise physiologist, a naturopath, a dietitian – desperately trying to understand why her body no longer felt like her own
In July 2025, after months of noticing persistent swelling in her neck, Ashleigh returned to her GP.
An ultrasound revealed something unexpected – tumours.
‘The doctor told me not to worry. That the tumours were rare, but usually not aggressive, and there was only a 10 per cent chance of metastasising.’
But an urgent CT scan told a different story.
The cancer had already metastasised – spreading to her lymph nodes, spine, and later, her vagus nerve.
‘It was a big shock – but even then, I didn’t process it properly. I kept saying I didn’t have cancer, just tumours,’ she said.
But as more results came in – confirming genetic mutations, hormone secretion from the tumours, and further spread – the truth became impossible to avoid.
‘It was bad news after bad news. I thought I could just get through it and go back to normal.’
The mum worked extra jobs delivering food through DoorDash, Uber Eats, and Menulog to support her family before undergoing major surgery in November 2025 to remove one tumour
Determined to keep life moving, Ashleigh threw herself into treatment.
She worked extra jobs delivering food through DoorDash, Uber Eats, and Menulog to support her family before undergoing major surgery in November 2025 to remove one tumour.
Then came radiation over Christmas and New Year.
While others celebrated, she spent her days in hospital undergoing high-dose treatment to her spine.
‘It was isolating. Everyone else was happy and enjoying their time off work, de-stressing … but I was just trying to survive radiation,’ she said.
The toll was immediate and brutal, and the mum said she wasn’t prepared for the sheer level of exhaustion and pain.
Just days after finishing treatment, she returned to work – determined to push through because she didn’t have enough leave in the bank.
‘I thought I could just do the surgery, the radiation, the next surgery… and then get on with my life.’
While others celebrated Christmas and New Year, Ashleigh spent her days in hospital undergoing high-dose treatment to her spine
In January 2026, Ashleigh underwent a second surgery – one that would alter the course of her life
But her body had other plans.
In January 2026, Ashleigh underwent a second surgery – one that would alter the course of her life.
Doctors were forced to leave behind a large tumour tangled through her facial nerves. Removing it would have meant losing her ability to speak, swallow, or move her tongue.
‘I wasn’t informed the tumour was inoperable until I was being wheeled into surgery. It’s been described as an egg that’s sitting behind my ear and under my skull, pushing everything out.
‘It causes this combination of an ear and toothache at the same time, so the left side of my face is constantly throbbing. There’s a sense of rushing pressure – and they’ve just left it in.’
Since the operation, her recovery has been relentless.
Ashleigh’s blood pressure spiked to life-threatening levels, she endured constant migraines so severe she couldn’t tolerate light, leaving her home in darkness for months.
‘My head hurts 24 hours a day. I wear sunglasses inside and my family has to eat dinner in the dark.’
Doctors were forced to leave behind a large tumour tangled through her facial nerves. Removing it would have meant losing her ability to speak, swallow, or move her tongue
The mum also revealed she was constantly vomiting from the pain and kept fainting around the house – totally losing her independence.
The neurologist realised Ashleigh’s extreme adverse reaction was due to her being allergic to the opioids for pain management she’d been prescribed – forcing her to stop suddenly and endure more unbearable pain.
‘There were weeks I couldn’t walk, couldn’t talk, couldn’t leave the bedroom.’
And her children watched it all unfold.
‘They saw me fainting… they saw the migraines. It terrified them. I didn’t tell them about the diagnosis at first – because their father has a friend who recently passed away from brain cancer.
‘So for my 10 and 12-year-old, cancer meant death. When I finally did it I promised them I was not going to die, and I’ve been trying to give them age-appropriate information since then.’
At her lowest, Ashleigh found herself confronting the unthinkable.
‘I wrote letters to my children. I wrote a letter to my husband… just in case something went wrong. The hardest moment of this journey so far has been facing the idea that this cancer could kill me.
‘I’ve been afraid to ask my doctors about whether or not what I’m going through right now is considered terminal.’
The mum said her migraines were ‘constant’ and she had to wear sunglasses all the time because light caused too much pain
At her lowest, Ashleigh found herself confronting the unthinkable – the possibility of leaving her children behind
One moment, in particular, has stayed with her.
‘While we were waiting for the ambulance after a particularly awful migraine, and I remember saying to my husband, “I haven’t said goodbye to the kids”.’
With no clear treatment pathway and no cure for such a rare cancer – and survival rates hovering around 65 per cent beyond five years – Ashleigh is now living in limbo.
‘It’s terrifying… but you have to push that down and keep going. We haven’t been able to make any plans for the future, even months down the line is too long to think about.
‘We had all these ideas about what life was meant to look like – we wanted to buy a house, go on holidays, but we’ve put all our savings into my treatment.’
Future treatment will focus on slowing the cancer, not eliminating it.
‘We’re still hoping for medical changes in the field. I don’t know if we can get rid of the tumours, but the aim is to get them under control, and to get them to stop secreting hormones.’
Ashleigh has had to give up her job, her routine, and the life she once imagined. Financial pressures have mounted. Simple tasks now require careful pacing – or help from others.
‘I can’t even walk more than 100 metres,’ she said.
For someone who once ran her household, the loss of independence has been one of the hardest blows.
But amid the uncertainty, her focus has shifted.
‘My husband has to remind me that it just has to be day by day. And on bad days, he’ll remind me that we can take it hour by hour.’
Plans for the future have been replaced with smaller, quieter moments – time with her children, words of love said out loud, gratitude where she can find it.
‘It’s really hard to go through something like this and not be completely changed by it,’ Ashleigh said.
‘We don’t wait for big moments anymore. We just make lots of little ones.’
