Below she shares her story to help raise awareness and to help others feel less isolated.
In January 2022 I decided to get fit and joined a gym. I started going regularly, four times a week before work. Around March 2022, my knee started to feel sore, but not enough to stop me going to the gym.
I thought maybe I was overusing my leg, so had a two-week break, but it made no difference.
Over the next few months I went to see an NHS physiotherapist and a private physiotherapist at the gym. I was told the pain was due to overuse and poor technique and was sent away with exercises to follow.
I paid for a personal trainer to help me improve my technique, but my knee continued to ache. I then had an appointment with the physiotherapist at my GP surgery, who again told me it was nothing serious, maybe just a sprain or overuse, and gave me more exercises to follow.
Nothing was helping and the pain was getting worse, so I made an appointment to see my GP. I was prescribed some painkillers and told to go back to see the physiotherapist.
At this point I was getting very frustrated as I knew something wasn't right. Around August time I started to get sharp stabbing pains in my knee. They were so painful that I was reduced to tears. My knee had also given way twice when I was walking.
I went again to see an NHS physiotherapist who diagnosed with bursitis in my knee and was given yet more exercises. At my follow-up appointment six weeks later, I was still in pain. This time, the physiotherapist thought my pain was more in the bone, so I was referred for an MRI.
He told me my appointment would be in 3-4 weeks. When I tried to chase an MRI scan, I was told the wait time was 52 weeks!
At this point I was unable to work as a community nurse, since I could no longer kneel. I could not wait 52 weeks, so I pushed for a 3-4 week urgent referral.
After the MRI scan, I got a phone call to see an orthopaedic consultant at the local hospital in two weeks' time. At the appointment, the consultant told me they had found something in my proximal tibia (lower leg) just below my knee, but they did not know what it was. I was told that I was being referred to the orthopaedic oncology at the Royal Orthopaedic Hospital in Birmingham (ROH).
To say I was shocked was an understatement. I'm sure I didn't quite take it in as I went to work the same day and carried on as normal.
The next two days were very difficult as I was expecting the worst. Fortunately, at my first appointment at ROH I was told I had a Giant Cell Tumour of the Bone (GCT), a tumour that is usually benign. I was so relived.
A biopsy confirmed the diagnosis of GCT. I had surgery on 24th January 2023 where the GCT cells were scraped away (curettage) and the bone replaced by bone cement and a bone graft. The pain following surgery was worse than I thought it would be, but I was relieved to get it done.
I kept a diary which helped me see progress for the days when I was feeling a bit low.
I have been using a wheelchair and crutches since my diagnosis both before and after surgery, which has been a huge change to my life. I used to go to the gym 3-4 times per week, and work as a community nurse, all of which had to stop.
The Bone Cancer Research Trust GCT Digital Support Group has been a lifesaver for me. GCT is such a rare condition and none of my friends or family had heard of it before. Before finding the group, I felt very isolated.
My advice to others would be to seek help early. Seek support from specialists and reach out to groups of people who know what it's all about and can understand what you are going through. This is where you will get your strength. Try to remain positive too.
The earlier the diagnosis, the easier the treatment and less risk of having more complications or severe surgery. You know your body and you know when something isn't right. I should still be waiting for my MRI scan right now, but I knew something wasn't right and pushed for an earlier scan.
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