Below she shares her story to help other patients feel less alone.
My symptoms began in 2015 with severe stabbing pain in my right ankle, which caused me to struggle with weight bearing. I visited my GP, had an x-ray, and was referred to an orthopaedic consultant in Leicester as the GP was unsure about what they had found.
The consultant in Leicester confirmed Giant Cell Tumour of the Bone (GCTB) in the talus bone of my right ankle, and my treatment started quickly. I had surgery, which involved curettage and a bone graft with the aim of new bone growing around it.
In 2017, I experienced a local recurrence after experiencing similar symptoms including severe pain, difficulty weight bearing, my ankle 'giving way', and lack of movement due to stiffness. I received more surgery, but this time it was curettage and bone cement to offer more structure.
Fast forward eight years, and I started to experience similar severe, sharp stabbing pains when weight bearing.
I visited my physiotherapist to try and build up strength, but my pain continued.
After going back to using two crutches and non-weight bearing, I asked for an MRI scan and a referral back to my old consultant. Luckily, he was still working and agreed to see me.
Following the MRI scan, it was confirmed that my GCTB had returned and destroyed most of my talus bone — less than five per cent of it remained. Due to the complexity of a third recurrence, I was referred to the Royal Orthopaedic Hospital in Birmingham.
Over one month I had three biopsies, countless scans, and on my 31st birthday it was confirmed that my tumour had undergone malignant transformation and metastasised to my pelvis, sacrum, and cervical spine. My consultant told me that he had only seen two other malignant GCTBs in his experience, and never bone-only metastasis.
Being told you are rarer than hen's teeth by an oncology consultant is not what you want to hear.
My mind immediately went to there's no treatment, there must be someone else, how will I find support groups, how long have I got left to live.
I left that appointment with one hundred questions and a sense of stillness.
I was sent home under the care of a new oncologist alongside my old orthopaedic consultant. Because there is no licensed chemotherapy for malignant GCTB, we decided to try MAP chemotherapy which is currently used to treat osteosarcoma. My treatment was carried out as an inpatient from September 2024 - April 2025.
It was ruthless, relentless, and characterised by late night admissions with neutropenic sepsis.
I spent most of the eight months in hospital video calling my two-year-old son and now-husband. I lost three stone in weight and suffered mouth ulcers, constant nausea, sores on my hands and constipation. Thankfully, most of the side effects subsided once I finished treatment.
To help myself cope, I learned to crotchet, starting with granny squares and recently finishing a jumper! I also planned a wedding from my hospital bed and married my partner of ten years. It was the most enchanting, magical day full of love, celebration and connection.
As a mental health nurse and DBT therapist, I used my own teachings to help me through. I shout, cry, and validate my anger and sadness.
I have no control over what cancer does, but I do have control over how I choose to live the rest of my life.
Support from my family, especially my husband and son, has meant everything. I had to use a wheelchair or mobility scooter for eight months due to the pain in my ankle, which I struggled to accept as a young mum. My husband not having an inch of embarrassment walking alongside me was a huge help.
My recent scans have shown no progression: one tumour has shrunk, another has changed in composition, and two remain stable. While there's no "all clear" in sight, I hope to continue hearing "stable" or "under control" in my check-ups. I left my last one smiling, dreaming of Disneyland.
Bone tumours are brutal — lonely, underrepresented, and difficult. But you are not alone. Utilise the support offered to you and focus on living, not just surviving. Time is the most precious thing we have.
People often pass off pains as 'niggles' or expect it to pass, to then be faced with a late diagnosis when options are limited.
Early diagnosis offers better outcomes and less aggressive treatments which is why awareness, education, and research is urgently needed.
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