NHS nurse who had leg amputated after rare tumour found in calf says going into ‘survival mode’ helped her ‘stay positive’

An NHS nurse who had her leg amputated after an extremely rare cancerous tumour was discovered 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 who has worked as an intensive care nurse for four years, noticed an “aching” pain behind the knee of her right leg in March 2024.

Having recently enlisted the help of a personal trainer, Sophie put the pain down 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 caused by a blood clot or a muscular problem, Sophie’s worsening pains prompted her to push for further answers, especially when she found her right calf was “six centimetres bigger than the other”.

Sophie had 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 received in December 2024 – and she is now adapting 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”.

“It was a massive shock but it felt like the best chance of living a normal-ish life afterwards,” Sophie told PA Real Life.

“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 said she started exercising with a personal trainer in March 2024, but over the subsequent weeks she noticed feeling an “aching” pain behind the knee of her right leg.

“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 noticed the pain got “progressively worse” over the next few months, to the point her leg would hurt even with light activity.

At the end of August 2024, Sophie was getting ready for a late shift at work when she noticed 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 explained her intensive care ward contains “mini ultrasound machines”, and a consultant suggested doing a scan on the back of her leg.

The scan was inconclusive, Sophie said, and she was advised to go to her hospital’s A&E department.

There, it was thought Sophie could be suffering from 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 having a more thorough examination on her leg, Sophie was told she could have a Baker’s cyst, a fluid-filled lump at the back of the knee that can sometimes get better on its own, according to the NHS.

Sophie said she was “happy” with the diagnosis as the symptoms she felt appeared to be similar.

By November 2024, however, Sophie said the pain became “constant” and she could no longer bend her leg.

“My calf was massive, I think it measured six centimetres bigger than my other one,” she said.

Sophie sought further help from her GP, who recommended she see a physiotherapist, but while waiting for the appointment she felt something “was not right”.

She instead went to a walk-in health centre, where it was advised she have a full ultrasound scan on her leg.

Following the scan, Sophie said she was sent 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 very next morning, on November 12 2024, Sophie was asked to return to receive her results, saying she thought: “Oh no, this is soon,”

Sophie said she was told her scan had revealed a large tumour in her calf, which was thought 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 signed off work and referred to The Robert Jones and Agnes Hunt Orthopaedic Hospital in Shropshire.

Following 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 arise in patients over the age of 40 and are extremely rare, making up just 2-5% of all primary bone cancer cases, the charity says.

Sophie was informed 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 received an above-the-knee amputation on December 17 2024, and she said the operation and her healing process was “very smooth”.

Adapting to using a prosthetic was “very difficult”, however, and Sophie initially found 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 have a scan every three months for the next two years to monitor any potential recurrences of cancer.

She has also returned to work, in a non-clinical setting for the time being, where she noticed she feels “more emotional” following her experience.

Sophie is sharing her story to mark Bone Cancer Awareness Week by the Bone Cancer Research Trust, the UK’s leading charity dedicated to fighting 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.”

For more information, visit the website for the Bone Cancer Research Trust here: bcrt.org.uk