Teenage girl faced with leg amputation after doctors dismissed rare cancer tumour as ‘muscle ache’

At just 18-years-old, Gracie Butler didn’t think anything of it when she started experiencing pains in her leg.

Visiting her GP, she was sent home with a diagnosis of muscle aches—and later, tendonitis. 

But the pain continued—and soon, even physiotherapy and muscle gels failed to soothe it.

Then, after a night out, Ms Butler woke up to a horrifying revelation: she was suddenly unable even to walk. 

Rushed to hospital, where she underwent an X-ray and biopsy, the teenager was given terrifying news. 

Her leg pain was in fact the result of a spindle cell sarcoma, a rare and aggressive cancerous tumour.

Life, Ms Butler, now 32, explained, changed in an instant.

‘My family and I were in shock,’ she said. 

Rushed into treatment, Ms Butler underwent a ‘tough’ round of chemotherapy, and was told she may not be able to keep her leg, or have children one day.

There wasn’t even time to freeze her eggs, leaving her ‘numb and scared’ for the future.

Ms Butler started a course of the highest dose of chemotherapy available, supported by the Teenage Cancer Trust throughout, and spent several weeks in hospital while she battled infections.

Four months after her diagnosis, Ms Butler had surgery to remove her tibia – also known as the shinbone. 

The pioneering surgery saw the bone exposed to radiation to kill the cancerous cells, and then put back into her leg, fixed with metal plates.

Ms Butler said: ‘It was ground-breaking surgery. But treatment afterwards was unbearable.

‘Chemotherapy was affecting the healing process, and the 20cm wound from surgery was not closing, and recurring infections caused the wound to become deeper and open even further.

‘In addition, the chemotherapy was causing my skin to burn and giving me internal ulcers throughout my body.’ 

Doctors decided to halt her chemo for a period to give her body a chance to regain strength, picking up again a month later.

While her treatment ended six months later, Ms Butler battled sepsis as her leg struggled to heal, and has since endured multiple surgeries to improve the condition of her damaged leg, as well as physiotherapy.

Despite all the hardships, Ms Butler managed to fulfill her dream of becoming a parent, and is single mum to her son, Roux, 10.

She says she’s finally been able to bounce back and kickstart her life again.

‘In 2015, after the cancer treatment and while in a leg frame, I gave birth to my little boy, who is a miracle after being through such an aggressive course of chemotherapy, menopause symptoms and being told children were unlikely.

‘I am just so grateful that I had him and I get to spend my life being his mum, so I make the most of that, seeing as many places and going on different adventures and enjoying the everyday with him – because I know I am so lucky I got to have him.’

Ms Butler is now a volunteer managed at Rotherham Hospice, a charity – which was influenced by her experience of being supported personally by Teenage Cancer Trust.

She added: ‘Being in hospital on an adult ward has made me be unbelievably appreciative of the work of Teenage Cancer Trust and the units they provide for young people experiencing cancer.

‘Even though having cancer was really tough at a young age, it shaped who I am as a person, and I will be forever grateful.

‘I look back on my cancer experience with positive memories and know I am fortunate to be here 12 years on, to have a leg that works and to have a beautiful son.

‘I’m certain it would have been extremely different if I didn’t have the Teenage Cancer Trust unit.

‘The time we had together as a family, there were some of the best memories and brought us even closer together.’