Matt Webster, of Engadine, had just moved overseas to further his career as an engineer when his life changed forever.
Mr Webster, then 24, had been based in Chile for six months while he worked throughout South America when he saw a doctor about severe back pain.
‘‘I thought I had pinched a nerve or slipped a disc or something like that but it kept getting worse,’’ he said.
He went to hospital and underwent an MRI.
‘‘The doctors came in and spoke to me at 2am,’’ he said.
‘‘They said ‘catch the next flight home to Australia’.’’
Tests had revealed a spinal tumour. Back in Sydney, he underwent surgery a week later.
Doctors first suspected Ewing’s Sarcoma and it took five weeks to diagnose a much more rare form of sarcoma, of which there are less than 500 reported cases in the world.
They said he was ‘‘lucky’’ because it only matastises in 1 percent of cases.
But his relief at not needing any more treatment was shortlived. Within weeks cancer cells were found at two more sites in his spine.
Doctors operated twice then suggested radiotherapy.
But a routine scan at the end of the treatment found a tumour in his pancreas.
He underwent major surgery in January last year to remove 40 percent of his pancreas and his spleen.
After six weeks’ recovery he started chemotherapy, but tumours continued to appear throughout his body; including in his bones and soft tissue.
He underwent three more surgeries to remove tumours from his right hip and left arm.
A titanium rod was placed in his arm to remove tumours in his bone and muscles.
At one point, tumour samples were sent to the world’s leading sarcoma expert in the US who was baffled and could offer no treatment suggestions. His message was ‘‘good luck’’.
In all, Mr Webster underwent nine operations, 35 rounds of radiotherpy and 13 rounds of chemotherapy. With doctors here unable to offer any hope, his mother took him to Germany in September for specialised treatment.
For the first time, the cancer responded and he was prescribed two drugs.
One of the drugs is available on the PBS at a cost of $6.50, but only for lung cancer patients, so the family paid $12,000 for a two-month supply.
The second drug costs $8700 a month.
So far his family has spent $150,000 on treatment.
He flew to Germany with his mother again on December 2 to take part in a clinical trial of antibody treatment, which cost about $80,000 plus flights and accommodation.
Mr Webster told the Leader the day before he flew out last month that he had tumours ‘‘everywhere’’, including his left leg, back, lungs, spine and shoulder blade.
Mr Webster and his mother returned to Australia on Christmas Eve and he has started another round of treatment, which is again not covered under the PBS because his cancer is so rare.
His former school, Engadine High, recently held a fundraising night, which raised $5000.
The charity Rare Cancers Australia is also raising money for Mr Webster on its Sick or Treat website. Donations are tax deductible.
