Brisbane Mother's Six-Year Medical Mystery Ends With Devastating Rare Cancer Diagnosis
A Brisbane mother who spent over six years searching for answers to her worsening and seemingly random symptoms has shared the heartbreaking 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 half a decade before a scan in July 2025 changed everything.
The Long Search for Answers
Ashleigh went from specialist to specialist during her years-long medical odyssey, consulting GPs, physiotherapists, osteopaths, exercise physiologists, naturopaths, and dietitians in a desperate attempt 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 revealed to the Daily Mail.
Her symptoms were vague but relentless:
- Constant sickness with flus and colds
- Deep, unexplainable pain throughout her body
- Difficulty eating with a strange 'bread pain' sensation like something stuck in her throat
- Unexplained pancreatitis followed by gastritis and chronic inflammation
Even CT scans of her abdomen failed to reveal the truth because the affected area was positioned too low to show the tumours developing in her throat and back. After every test came back clean, Ashleigh eventually stopped investigating, telling herself this must simply be her life.
The Shocking Discovery
What Ashleigh initially thought might be swollen lymph nodes turned out to be bilateral carotid body tumours that had been quietly growing for decades. This cancer is so exceptionally rare that fewer than 40 cases like hers have ever been recorded worldwide.
In July 2025, after months of noticing persistent swelling in her neck, Ashleigh returned to her GP. An ultrasound revealed the unexpected tumours, though initially doctors downplayed the severity. '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,' Ashleigh recalled.
But an urgent CT scan told a completely 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 admitted.
Life-Altering Treatment and Its Aftermath
Determined to keep life moving forward, Ashleigh threw herself into treatment while continuing to work extra jobs delivering food through DoorDash, Uber Eats, and Menulog to support her family. She underwent major surgery in November 2025 to remove one tumour, followed by radiation treatment over Christmas and New Year.
'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 of spending her holidays in hospital undergoing high-dose treatment to her spine.
In January 2026, Ashleigh underwent a second surgery that would permanently alter the course of her life. Doctors were forced to leave behind a large tumour tangled through her facial nerves because 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,' Ashleigh revealed. '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.'
The Ongoing Struggle
Since the operation, Ashleigh's recovery has been relentless and brutal. Her blood pressure spiked to life-threatening levels, and 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,' she explained.
The neurologist discovered Ashleigh was having an extreme adverse reaction due to being allergic to the opioids prescribed for pain management, 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,' she said.
Her children, aged 10 and 12, watched everything unfold. 'They saw me fainting… they saw the migraines. It terrified them,' Ashleigh shared. '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 children, cancer meant death.'
Confronting Mortality and Finding New Priorities
At her lowest points, Ashleigh found herself confronting the unthinkable possibility of leaving her children behind. 'I wrote letters to my children. I wrote a letter to my husband… just in case something went wrong,' she confessed. 'The hardest moment of this journey so far has been facing the idea that this cancer could kill me.'
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 now lives in limbo. Future treatment will focus on slowing the cancer rather than eliminating it.
'We're still hoping for medical changes in the field,' she said. '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, and simple tasks now require careful pacing or help from others. 'I can't even walk more than 100 metres,' she revealed.
But amid the uncertainty, her focus has shifted to smaller, quieter moments. 'My husband has to remind me that it just has to be day by day,' she said. 'We don't wait for big moments anymore. We just make lots of little ones.'
