A father who went to his GP with stomach pains and was told he might have kidney stones nearly fainted when doctors diagnosed a rare cancer and later found a tumour the size of a football.
Simon White, now 60, from Much Hadham, Hertfordshire, visited his GP in 2024 complaining of stomach pains. An ultrasound proved inconclusive, but a urologist suggested he might have sarcoma, an uncommon cancer that can affect any part of the body, including muscle, bone, tendons, blood vessels and fatty tissues. He was referred to the Royal Marsden Hospital in London, which specialises in cancer treatment.
Shock Diagnosis and Complex Surgery
White said: "When I was told it was sarcoma, I nearly fainted. I had to lie down on the bed in the room. It was a real shock."
He had a soft tissue leiomyosarcoma attached to his inferior vena cava, the largest vein in the human body, which collects deoxygenated blood from the lower half of the body and delivers it to the heart. An average of 525 cases of leiomyosarcoma a year are diagnosed in England. The consultants told White they see cases as complex as his just once a year.
A six-hour operation took place in October 2024, when surgeons removed a tumour the size of a football. The medics believed it had been growing for around a year. After surgery, White returned home and had regular scans to monitor his wellbeing.
Further Treatment and Family Support
At the start of this year, a nodule was detected in a lung. Keyhole surgery was conducted by a robot at the Royal Brompton Hospital to remove it. White said: "After the first operation there was a period of euphoria, but eventually it was all quite difficult to process."
He and his wife Jo have received psychological support at the Royal Marsden. His daughter Mollie, 20, said: "The team have been incredibly kind and provided people to talk to, offered support groups as well as having regular check-ups and scans. My dad's journey continues, but having the right support around him has meant the world to us."
She admitted the family found it tough when her father was diagnosed. "It's been a whirlwind, but we tried to think positively," she said. "It's amazing how positive Dad is."
Return to Work and Charity Walk
White, who also has a 22-year-old son Thomas, has been able to return to his job as an accountant. He is currently cancer-free and took part in Sarcoma UK's Rare But Real walk in Gunnersbury Park, west London, on Sunday, November 1. He often enjoys walks near his home with his dog Sophie.
He was told about the charity by a Royal Marsden nurse and is now helping to raise funds for its research work. He said: "You can be cancer-free but you're always a cancer patient. Having cancer does change your priorities in life."
Sarcoma UK's research manager, Emily Williams, said: "Simon's story shows why research into rare cancers like leiomyosarcoma is so important. His consultants told him they see a case as complex as his only once a year and, because this cancer is so rare, there's still so much we don't know about it.
"That's why we've awarded £129,979 to Professor Darryl Overby at Imperial College London to understand how leiomyosarcoma grows and spreads. His team is using an innovative device thinner than a human hair to study this up close. In time, this could help doctors identify which patients are most at risk and tailor treatment to each person."
