A man is sharing his harrowing health battle after waiting three years to be diagnosed with a rare form of cancer – twice – and says it almost cost him his leg.
When Jake Spencer started experiencing pain in his left thigh while learning how to drive, he assumed it was muscle strain from using the clutch.
But then, the “excruciating” issue persisted, even when doing daily tasks.
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He sought out medical advice, though it took almost three years of unrelated treatment until the now 26-year-old received his actual diagnosis; cancer.
Now, he’s sharing his battle with the disease twice in a bid to raise awareness of the warning signs to look out for – especially as he almost lost his leg.
“If this hadn’t been caught [when it did], due to the Location of the tumour, it’s possible I’d have needed an amputation,” the administrator, from Ashford, Kent, told Need To Know.
“I only 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 all in my head, there was an answer to this.
“It was a liberating feeling.”
Jake’s ordeal began aged just 17, with his symptoms initially diagnosed as sciatica; a pain and weakness in the leg due to a damaged nerve.
He was prescribed painkillers before his leg started to “seize up” which became so painful, he struggled to leave the house.
The then teen went through physiotherapy, x-rays, shockwave therapy and having five needles into his thigh to drain a supposed fluid-filled sac.
But with no success, and no answers, Jake decided to try one last time.
In August 2018, after a biopsy, he was diagnosed with a synovial sarcoma tumour, an aggressive malignant type of cancer found in soft tissue.
According to Sarcoma UK, this type of disease is so rare that the UK only sees around 79 cases per year.
He said: “I felt as though so many signs and symptoms had been missed.
“I was angry it’d been left all that time and been allowed to grow, causing more pain, despite expressing I was in agony.
“I didn’t think about the future, I just knew I had to get through the present to even 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 of his thigh in November 2018.
But sadly, his battle was far from over.
He said: “I was having one of my regular checkups when a shadow was spotted on my lungs.
“It turned out another sarcoma tumour was there, which had been obscured by my heart.
“I was in disbelief, it felt like a kick in the stomach.
“I was terrified of not surviving the chemotherapy or treatment that would be required to get rid of it.
“I was at university at the time, and it was during the pandemic, so I had to be separated from my family.
“To not have them around me was just devastating.
“It was heartbreaking for all of us.”
In May 2020, he had an operation to remove the tumour from his lung; and since then, he’s remained cancer-free.
While happy he’s able to look toward the future, he now faces complications due to his diagnosis being left for so long.
He’s sharing his journey to warn other people of the signs to look out for and to always get another opinion if you’ve got a gut feeling there’s something worse going on.
Jake added: “Despite the fact I lost part of my muscle, I am really grateful the cancer was removed.
“I have ongoing orthopaedic issues due to muscle loss in my thigh, but I’m remaining 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 some ways, I am grateful that I did have pain, as I’ve heard horror stories of people who never knew they had sarcoma cancer until it was much too late.
“It took 941 days for me to be diagnosed and I think of myself as very lucky to have survived.”
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