When Jake Spencer started feeling pain in his left thigh while learning to drive, he assumed it was a muscle strain from using the clutch.
But the real cause of the mysterious pain was a rare form of cancer that nearly cost the man, now 26, his limb.
However, it would take three years for doctors to discover that the disease was the real culprit, and if it had taken much longer, they would have had to amputate his leg.
And even then, it would come back to haunt him again.
“If they hadn’t caught it (when they did), because of the location of the tumour, it’s possible he would have needed an amputation,” said the manager, from Ashford, Kent.
When Jake Spencer started feeling pain in his left thigh while learning to drive, he assumed it was a muscle strain 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 what you see in the movies: everything went in one ear and out the other.
‘I was on autopilot for a few days trying to figure out what was going on.
“But at the same time, I felt a relief: the pain wasn’t just in my head, there was an answer for it. It was a liberating feeling.”
Jake’s ordeal began when he was just 17; his symptoms were initially diagnosed as sciatica, a pain and weakness in his leg due to a damaged nerve.
She was prescribed painkillers before her leg began to “seize up,” causing her to have so much pain that she had trouble leaving the house.
The then-teenager underwent physical therapy, X-rays, shockwave therapy and had five needles placed in his thigh to drain a suspected fluid-filled sac.
But with no success and no answers, Jake decided to try to get to the bottom of the case one last time.
In August 2018, after a biopsy, she was diagnosed with a synovial sarcoma tumor, an aggressive malignant type of cancer found in soft tissues.
This form of cancer is so rare that only around 79 cases are recorded in the UK each year, according to the charity Sarcoma UK.
She said: “I felt like a lot of signs and symptoms had been overlooked.”
‘I was angry that they had left it like that all that time and let it grow, causing more pain, despite expressing that he was in agony.
‘I didn’t think about the future, I just knew I had to get through the present to have a future.
“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 from his thigh in November 2018.
In August 2018, after a biopsy, she was diagnosed with a synovial sarcoma tumor, an aggressive malignant type of cancer found in soft tissues.
But sadly, her battle was far from over. She said: “I was doing one of my regular check-ups when I noticed a shadow on my lungs.
‘It turned out that there was another sarcoma tumor there, which had been hidden by my heart.
“I couldn’t believe it, it was like I’d been kicked in the stomach. I was afraid I wouldn’t survive the chemotherapy or the treatment it would take to get rid of it.
‘I was in college at the time and it was during the pandemic, so I had to separate myself from my family.
“Not having them by my side was devastating. It was heartbreaking for all of us.”
While Jake was undergoing successful treatment for 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, she underwent surgery to remove the tumor from her lung and has been cancer-free since then.
Although she is happy to be looking forward, she now faces complications due to her diagnosis being left in place for so long.
He shares his journey to warn other people about the signs they should look out for and to always seek another opinion if they have a feeling something worse is happening.
Jake added: ‘Even though I lost some of my muscle, I’m really grateful that I had the cancer removed.
‘I have persistent orthopedic problems due to loss of muscle mass in my thigh, but I remain positive.
‘I don’t blame the doctors for the misdiagnosis, it was very difficult to detect as my tumour was very deep and there was no visible lump.
‘In a way, I’m grateful that I’ve felt pain, as I’ve heard horror stories from people who never knew they had sarcoma cancer until it was too late.
“It took me 941 days to be diagnosed and I consider myself very lucky to have survived.”
