When Simon White kept being woken in the night with stomach pains, he initially thought he had kidney stones. It turned out he had a rare cancer the size of a football.
It was in 2024 that Simon started to experience pains. Thinking it might be indigestion or kidney stones, he went to a GP. The GP used AI to analyse his symptoms and Simon was sent for an ultrasound scan.
The results were inconclusive but it was a urologist who first suggested to him that he might have sarcoma. Simon was referred to the cancer specialist Royal Marsden Hospital in London where more diagnostics took place. Despite this, he was still convinced that nothing serious was amiss until one day when he had an appointment where he was told he had cancer. He said: ‘When I was told it was sarcoma, I nearly fainted. I had to have a 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 vein. There are an average of 525 cases of leiomyosarcoma diagnosed every year in England. But Simon was told by consultants that they only see cases as complex as his once a year.
A six-hour operation took place in October 2024 when surgeons removed a tumour that, shockingly, was the size of a football. It is thought it had been growing inside Simon for about a year. Said Simon of the size of the growth: ‘How can that possibly be?’
After his recovery in hospital, Simon returned to his home in Much Hadham, Hertfordshire, and had regular scans to monitor his wellbeing.
At the start of this year, a nodule was detected in his lung, which was followed by an operation at the Brompton Hospital in London to remove it. The keyhole surgery was conducted by a robot, which was less invasive than open surgery.
As for his mental wellbeing, Simon admitted: ‘After the first operation, there was a period of euphoria but eventually it was all quite difficult to process.’ Simon and wife Jo have received psychological support at the Royal Marsden.
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 admits the family found it tough when her father was diagnosed. ‘It has been a whirlwind but we tried to think positively. It is amazing how positive dad is.’
Simon, 60, who also has a son Thomas, 22, returned to his job as an accountant and, currently cancer-free, is now looking forward to taking part in Sarcoma UK’s Rare But Real walk in Gunnersbury Park, West London, on Sunday 1 November. He often enjoys walks near his home with dog Sophie.
He was told about the charity by a nurse at the Royal Marsden and is now helping to raise funds towards Sarcoma UK’s work in research, offering support for anyone affected by sarcoma and its campaigns for better treatments.
He said: ‘You can be cancer-free but you are 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 is 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.’
To donate to Simon, go to Simon White is fundraising for Sarcoma UK
