Sophie Fay, 26, an intensive care nurse from Merseyside, initially thought the symptoms were caused by a muscle injury
Sophie Fay wants to raise awareness of the symptoms she experienced (Picture: Collect/PA Real Life)
An NHS nurse who had her leg amputated after an extremely rare cancerous tumour was found in her calf said going into “survival mode” helped her “process” her diagnosis and “stay positive”. Sophie Fay, 26, who lives in Merseyside with her father, Paul Fay, 67, and has been working as an intensive care nurse for four years, noticed an “aching” pain behind the knee of her right leg in March last year.
Having recently started training with a personal trainer, Sophie attributed the pain to a muscle injury but when her calf became “swollen” and “hot to touch”, with her work colleagues noticing the visible difference, she sought medical help.
After being told her symptoms could be due to a blood clot or a muscular issue, Sophie’s worsening pains led her to seek further answers, particularly when she found her right calf was “six centimetres bigger than the other”.
Sophie underwent an MRI scan in November 2024, which revealed a large tumour “taking up the entirety of (her) calf”, and the mass was diagnosed as spindle cell sarcoma of the bone, an extremely rare soft-tissue tumour.
As her blood vessels and nerves were “completely encased” by the tumour, Sophie was informed the only option was an above-the-knee amputation, which she underwent in December 2024 – and she is now adjusting to life with a prosthetic.
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”.
Sophie is sharing her story to mark Bone Cancer Awareness Week (Picture: Collect/PA Real Life)
Sophie told PA Real Life: “It was a massive shock but it felt like the best chance of living a normal-ish life afterwards.
“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 revealed she began working out with a personal trainer in March 2024, but during the following weeks she started 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 a point where her leg would hurt even during gentle activities.
Towards the end of August 2024, Sophie was preparing for a late shift at work when she realised her leg appeared “swollen” and felt “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 detailed that her intensive care ward is equipped with “mini ultrasound machines”, and a consultant suggested performing a scan on the back of her leg.
The scan didn’t provide a clear result, Sophie shared, and she was advised to visit her hospital’s A&E department.
At the A&E department, it was suspected that Sophie might be dealing with a muscular injury.
Sophie said her operation and healing process were ‘very smooth’ (Picture: Collect/PA Real Life)
Sophie said: “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.”
After undergoing a more comprehensive examination on her leg, Sophie was informed that 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 mentioned she was “happy” with the diagnosis as the symptoms she experienced seemed to match.
However, by November 2024, Sophie revealed that the pain became “constant” and she was no longer able to bend her leg.
She said: “My calf was massive, I think it measured six centimetres bigger than my other one.”
Sophie sought additional help 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 it was recommended she have a full ultrasound scan on her leg.
Following the scan, Sophie shared that she was referred to the urgent care centre at her hospital for further examinations, and a few days later she underwent an MRI scan on November 11, 2024.
The next morning, on November 12, 2024, Sophie was asked to return for her results. She said: “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.
She said: “I just lost my head, there were all sorts of mad things going through my mind.
“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 signed off work and referred to The Robert Jones and Agnes Hunt Orthopaedic Hospital in Shropshire.
After a biopsy, Sophie was diagnosed on November 29, 2024 with spindle cell sarcoma of the bone – an extremely rare soft-tissue tumour, according to the Bone Cancer Research Trust.
Such tumours most commonly occur 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.
She said: “They showed me a picture of my scan, and the tumour takes up the entirety of my calf.
“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, describing the procedure and recovery as “very smooth”.
However, adjusting to life with a prosthetic proved “very difficult”, with Sophie initially finding it “exhausting” to cover short distances.
She said: “It’s comforting to know this is the hardest it will ever be.
“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 following two years to check for any possible cancer recurrence.
She has also resumed work, currently in a non-clinical capacity, where she has observed feeling “more emotional” after her ordeal.
Sophie is telling her story to highlight Bone Cancer Awareness Week, organised by the Bone Cancer Research Trust, the UK’s foremost charity committed to tackling primary bone cancer.
She added: “If sharing my story means bone cancer is spoken about more within healthcare, that’s the main thing.
“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.”
For more information, visit the website for the Bone Cancer Research Trust at bcrt.org.uk.