Sophie’s leg became ‘swollen’ and ‘warm to touch’ (Image: PA Real Life)
An NHS nurse who underwent leg amputation following the discovery of an exceptionally rare cancerous growth in her calf muscle revealed that entering “survival mode” enabled her to “process” her diagnosis and “remain positive”. Sophie Fay, 26, who lives in Merseyside with her father, Paul Fay, 67, and has served as an intensive care nurse for four years, experienced an “aching” sensation behind her right knee in March 2024.
Having recently secured the services of a personal trainer, Sophie attributed the discomfort to a muscle strain, but when her calf became “swollen” and “hot to the touch”, with colleagues at work observing the visible change, she pursued medical assistance.
After being informed her symptoms might stem from a blood clot or muscular issue, Sophie’s deteriorating pain levels drove her to demand additional investigations, particularly when she discovered her right calf measured “six centimetres bigger than the other”.
Sophie underwent an MRI scan in November 2024, which uncovered a substantial tumour “taking up the entirety of (her) calf”, and the growth was identified as spindle cell sarcoma of the bone, an exceptionally rare soft-tissue tumour.
Since her blood vessels and nerves were “completely encased” by the tumour, Sophie was advised the sole treatment option was an above-the-knee amputation, which she underwent in December 2024, and she is currently adjusting to life with a prosthetic limb. Sophie is sharing her story as part of the Bone Cancer Research Trust’s Bone Cancer Awareness Week, which runs from October 6 to 12, to raise awareness of her symptoms and prevent others from “falling through the cracks”.
“It was a massive shock but it felt like the best chance of living a normal-ish life afterwards,” Sophie said. “Going into survival mode helped me to process the diagnosis and stay so positive in the recovery period.
“The only thing I wanted was to not have cancer anymore and I thought once it’s gone, I can deal with that. You do get the realisation with something like this that our days are numbered and we’re not all invincible.”
Sophie wants to raise awareness of the symptoms she experienced (Image: PA Real Life)
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Sophie revealed she began working out with a personal trainer in March 2024, but during the following weeks she began experiencing an “aching” sensation behind her right knee.
“It would just happen when I exercised but I remember going for a walk and I thought the back of my knee was really sore,” Sophie said. She observed the discomfort became “progressively worse” over the coming months, reaching the point where her leg would hurt even during gentle activities.
By the end of August 2024, Sophie was preparing for a late shift at work when she realised her leg was “swollen” and “warm to touch”. “I had a visible limp at this time now as well, because it was hurting whenever I walked,” she said. “My colleagues noticed it was swollen and they suggested it could be a small blood clot in my leg.”
Sophie revealed that her intensive care ward is equipped with “mini ultrasound machines” and a consultant suggested scanning the back of her leg. The scan didn’t provide any clear answers, Sophie admitted, and she was advised to visit her hospital’s A&E department. There, it was suspected that Sophie might be dealing with a muscular injury.
“I didn’t really know any better at the time, I thought it could probably be muscular – what it ended up being was so far from my mind, it was unreal,” Sophie said.
After undergoing a more detailed examination on her leg, Sophie was informed she might have a Baker’s cyst, a fluid-filled lump at the back of the knee that can sometimes improve on its own, as per NHS guidelines. Sophie expressed relief at the diagnosis as the symptoms seemed to match her experience.
However, by November 2024, Sophie reported that the pain had become “constant” and she was no longer able to bend her leg. “My calf was massive, I think it measured six centimetres bigger than my other one,” she disclosed.
Sophie said going into ‘survival mode’ helped her ‘process’ her diagnosis (Image: PA Real Life)
Sophie sought additional advice from her GP, who suggested she consult a physiotherapist, but while waiting for the appointment she felt something “was not right”. She instead visited a walk-in health centre, where she was recommended to have a full ultrasound scan on her leg.
After her scan, Sophie was rushed to the urgent care centre at her hospital for further tests, and a few days later, on November 11, 2024, she underwent an MRI scan. The following morning, Sophie was called back to receive her results, recalling her thoughts: “Oh no, this is soon.”
Sophie revealed that she was informed her scan had uncovered a large tumour in her calf, suspected to be primary bone cancer. “I just lost my head, there were all sorts of mad things going through my mind,” Sophie said.
“I had a bit of knowledge around cancer and cancer care with my work and I couldn’t help but think it was a death sentence. I was really emotional and the worst part was knowing I had to go home and tell my dad.”
Sophie was given sick leave from work and referred to The Robert Jones and Agnes Hunt Orthopaedic Hospital in Shropshire. After a biopsy, Sophie was diagnosed on 29 November 2024, with spindle cell sarcoma of the bone – an incredibly rare soft-tissue tumour, according to the Bone Cancer Research Trust.
Such tumours are most commonly found in patients over the age of 40 and are extremely rare, accounting for just 2-5% of all primary bone cancer cases, the charity states. Sophie was told her only viable treatment option would be amputation, as her blood vessels and nerves were “completely encased” by the tumour.
“They showed me a picture of my scan and the tumour takes up the entirety of my calf,” Sophie said. “There wasn’t a way they could remove it safely to leave me with a functioning leg.”
Sophie underwent an above-the-knee amputation on December 17, 2024, and she said the procedure and her recovery was “very smooth”. Getting used to a prosthetic proved “very difficult”, however, with Sophie initially finding it “exhausting” to walk short distances.
“It’s comforting to know this is the hardest it will ever be,” she said. “As time goes on, I’ll get better prosthetic parts, a better socket and knee joint, things that will make it easier.”
Sophie will now undergo scans every three months for the next two years to check for any potential return of the cancer. She has also gone back to work, in a non-clinical role for now, where she has noticed feeling “more emotional” after her ordeal.
Sophie is telling her story to mark Bone Cancer Awareness Week by the Bone Cancer Research Trust, the UK’s leading charity devoted to tackling primary bone cancer.
“If sharing my story means bone cancer is spoken about more within healthcare, that’s the main thing,” she said. “I don’t assign any blame or anything, and I think it was really easy to say I was a young girl who pulled a muscle while exercising – I even made that conclusion in my own head.
“It’s very rare, but knowing what to look out for or knowing the signs that put bone cancer apart from any kind of muscular issue would mean people like me don’t fall through the cracks.”