When Jake Spencer experienced pain in his left thigh while learning to drive, he assumed it was a pulled muscle from using the clutch.
But the real cause of the mysterious pain was a rare form of cancer that nearly cost the now 26-year-old man his limb.
However, it would be another three years before doctors discovered that the disease was the real culprit. If it had lasted much longer, his leg would have had to be amputated.
And even then it would come back to haunt him.
“If this had not been noticed (when it happened) an amputation may have been required due to the location of the tumour,” said the manager, from Ashford, Kent.
When Jake Spencer started experiencing pain in his left thigh while learning to drive, he assumed it was a pulled muscle from using the clutch
But the real cause of the mysterious pain was a rare form of cancer that nearly cost the now 26-year-old his limb
‘I just remember being told it was cancer. It was literally like you see in the movies, everything went in one ear and out the other.
‘I was on autopilot for a few days, trying to understand what was happening.
“But at the same time there was a sense of relief — this pain wasn’t just in my head, there was an answer to this. It was a liberating feeling.”
Jake’s ordeal began at age 17. His symptoms were initially diagnosed as sciatica, a pain and weakness in the leg caused by a damaged nerve.
He was prescribed painkillers before his leg began to ‘cramp’, the pain becoming so bad he had difficulty leaving the house.
The then-teenager underwent physical therapy, X-rays, shockwave therapy and had five needles inserted into his thigh to drain a suspected fluid-filled sac.
But with no success and no answers, Jake decided to try one last time to find out the cause.
In August 2018, after a biopsy, he was diagnosed with synovial sarcoma, an aggressive, malignant form of cancer that develops in the soft tissues.
This cancer is so rare that there are only 79 cases a year in the UK, according to the Sarcoma UK charity.
He said: ‘I felt like so many signs and symptoms had been missed.
‘I was angry that it had been left there all this time and that it had been allowed to grow, which only made it hurt more, even though I had said it hurt a lot.
‘I didn’t think about the future. I just knew that I had to get through the present to have a future at all.
‘Nothing else really mattered. Survival mode is the best way to describe it.’
Jake underwent five weeks of radiotherapy, followed by surgery to remove 13cm of his thigh bone in November 2018.
In August 2018, he was diagnosed with synovial sarcoma, an aggressive malignant form of cancer that occurs in soft tissue, after a biopsy
But sadly his battle was far from over. He said: ‘I was having one of my regular check-ups when a shadow was spotted on my lungs.
‘It turned out that there was another sarcoma tumor, which was overshadowed by my heart.
‘I couldn’t believe it, it felt like a kick in the stomach. I was terrified that I wouldn’t survive the chemotherapy or treatment that would be needed to get rid of it.
‘I was in college at the time and it was the middle of the pandemic, so I had to be separated from my family.
“Not having them around was just devastating. It was heartbreaking for all of us.”
While Jake was undergoing successful treatment for the cancer in his leg, doctors later discovered another tumor, this time in his lung. Jake is pictured here with his parents, Sharon and Steve, and his sister, Shayna
In May 2020, he underwent surgery to remove the tumor from his lung and has been cancer-free ever since.
Although he is happy to be able to look to the future, he is now struggling with complications because his diagnosis took so long.
He shares his journey to warn other people about the signs to look out for and to always ask for another opinion if you feel like something more serious is going on.
Jake added: ‘Despite losing some of my muscle, I’m very grateful that the cancer has been removed.
‘I have ongoing orthopedic problems due to muscle loss in my thigh, but I remain positive.
“I don’t blame the doctors for the misdiagnosis. It was very difficult to discover the tumor because it was very deep and there was no visible lump.
‘In a way, I’m grateful that I had pain, because I’ve heard horror stories of people who didn’t know they had sarcoma cancer until it was far too late.
“It took me 941 days to get diagnosed and I consider myself very lucky to have survived.”