'My aches were diagnosed as tendinitis - but the truth was terrifying'

A young woman was left devastated after being misdiagnosed with tendonitis, only to discover she had a rare and aggressive form of cancer. At just 18, Gracie Butler, from Sheffield, started experiencing leg pain but did not think much of it.

Her GP initially diagnosed muscle aches and later tendonitis, but when physiotherapy and muscle gels did nothing to ease the pain, it became clear something more serious was amiss. The situation came to a head one night when Gracie woke up unable to walk after a night on the town.

An X-ray and subsequent biopsy revealed the startling truth - she had spindle cell sarcoma, a rare and aggressive cancerous tumour. Life as the 'carefree' teenager knew it changed overnight as she found herself in a fight for her life.

"My family and I were in shock," Gracie, from Sheffield, told NeedToKnow. Gracie was soon whisked into treatment, undergoing an intense course of chemotherapy, and was warned she might lose her leg or be unable to have children in future.

There was not enough time to preserve her eggs, leaving Gracie feeling 'numb and scared'. She embarked on the most intensive chemotherapy treatment available, with the Teenage Cancer Trust by her side throughout her ordeal. She spent countless weeks in hospital battling infections.

Four months following her diagnosis, Gracie went under the knife to have her tibia (shinbone) removed. This underwent radiation therapy to eliminate the malignant cells, before being put back into her leg and fixed with metal plates.

She said: "It was ground-breaking surgery. 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 to this, the chemotherapy was causing my skin to burn and giving me internal ulcers throughout my body."

Doctors decided to halt her chemotherapy temporarily to give her body chance to recover its strength, restarting treatment a month later.

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While her treatment finished six months afterwards, Gracie battled sepsis as her leg failed to heal properly, and has since had multiple surgeries to improve the condition of her damaged leg, along with physiotherapy.

Against all odds, now 32 and raising her 10-year-old son Roux alone, Gracie has managed to bounce back and rebuild her life. She said: "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."

Gracie is now a volunteer manager at the Rotherham Hospice, 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."