After enduring 941 days of pain, I finally received a diagnosis that could potentially endanger my life.

Jake Spencer, a young man of only 17 years old, began to experience an unusual pain in his left thigh while learning how to drive. Initially, he thought it was just a muscle strain caused by using the clutch, but the pain persisted and became excruciating, hindering his ability to carry out simple daily tasks. Concerned, he went to see his GP, but it wasn't until 941 days later that he received a diagnosis that would change his life forever - Sarcoma, a rare form of cancer that threatened to take his leg.

Looking back, Jake recalls the moment he learned the truth, "If this hadn't been caught when it did, due to the location of the tumor, I might have needed an amputation." The news hit him like a ton of bricks, and he admits that it was like something out of a movie - everything went in one ear and out the other. For the next few days, he was on autopilot, trying to process what was happening.

Despite the shock, there was also a sense of relief. Jake explains, "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." However, his relief was short-lived as he faced the daunting road ahead.

Initially, Jake's symptoms were misdiagnosed as sciatica, a condition that causes pain and weakness in the leg due to a damaged nerve - similar to the pain he had experienced during his driving lessons. He was prescribed painkillers, but when his leg started to seize up, it became clear that something more serious was going on. Over the next few months, Jake underwent various treatments, including physiotherapy, x-rays, shock wave therapy, and even had needles inserted into his thigh to drain a supposed fluid-filled sac. Unfortunately, none of these treatments provided any relief, and Jake's condition continued to worsen.

Feeling frustrated and desperate for answers, Jake pushed for a better diagnosis. Finally, in August 2018, at the age of 20, he received a biopsy that revealed a synovial sarcoma tumor, an aggressive and rare form of cancer found in soft tissue. According to Sarcoma UK, this type of cancer affects only 79 people in the UK each year. Jake couldn't help but feel that if his symptoms had been taken seriously earlier, perhaps his tumor could have been caught and treated sooner.

Reflecting on his journey, Jake admits, "I felt as though so many signs and symptoms had been missed. I was angry that it had been left for so long, allowing the tumor to grow and cause even more pain, despite expressing my agony." In the midst of his fear and frustration, Jake found himself in survival mode, focused solely on getting through each day.

Jake underwent five weeks of radiotherapy, followed by surgery to remove 13cm of his thigh in November of that year. However, his relief was short-lived when a routine check-up revealed another tumor on his lung. Jake was devastated and describes the feeling as a "kick in the stomach." Now in his twenties and facing the added challenges of the Covid-19 pandemic, Jake had to undergo treatment and face his fears without the support of his family by his side.

Despite his fear and uncertainty, Jake remained determined to fight and survive. He underwent surgery to remove the tumor from his lung in May of 2020 and has been cancer-free ever since. However, his journey is far from over as he now faces ongoing orthopedic issues due to the muscle loss in his thigh. Still, Jake remains positive and grateful for his survival. He admits, "I don't blame the doctors for the misdiagnosis. It was very difficult to detect as my tumor was 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."

Now, Jake is using his experience to raise awareness and encourage others to trust their gut and seek a second opinion if something doesn't feel right. He shares, "Despite the fact that I lost part of my muscle, I am really grateful that the cancer was removed. I have ongoing orthopedic issues, but I'm remaining positive. I think of myself as very lucky to have survived."

Jake's story is a reminder of the importance of being aware of our bodies and advocating for our health. If you have a story to share, please reach out and share it with us.

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