Danielle was diagnosed with chondrosarcoma July 2017, age 33 after experiencing a deep dull ache in her hip, which she thought was a pulled muscle.
The early symptoms were a deep dull ache in my hip and my leg kept collapsing. I just thought it was a pulled muscle. Over a period of 18 months my leg became hard and swollen, it doubled in size! The strange thing was that my dog knew something was wrong, he kept pawing at my leg.
I went for a check up with the doctor about an eye ulcer and the doctor asked if I had pain anywhere else as it can be a sign of being run down or chronic pain. I said my leg was hurting and showed him. Immediately he said that’s a sarcoma. He had seen a case of soft tissue sarcoma before and referred me for an urgent scan. He advised that if anything changed before the scan then I would have to go straight to A&E.
His face said it all! I sat in the car and called my mum. I didn’t know you could get cancer in your bone.
I returned to work but after a couple of hours the pain was too much. My boyfriend called 101 for advice, they said it could be a blood clot and to go straight to hospital.I arrived at Basildon Hospital with severe hip pain, a high temperature and I was told my general stats were not good at all.
A nurse at the hospital did an ultrasound on my leg and then an X-ray. I was then asked to stay for an urgent MRI scan. I wanted to go home but the nurse held my hand and said, ‘Please just stay in you need to get this sorted’. I looked at my mum and said, ‘That’s not good’!
Everything moved so quickly! I visited my GP on the Wednesday and by the Saturday I was admitted into hospital with MRI scans taking place on the Sunday. By Tuesday, I was referred to the Royal National Orthopaedic Hospital at Stanmore.
I had a biopsy at the end of July and I was told the tumour was mainly benign but with a bit of grade one and they said it's just on the border of chondrosarcoma.
“Being told you have cancer you feel lost and disbelief it's happening to you”
I had surgery August 15th to remove the tumour from the top of my femur. The tumour was the size of a rugby ball! I was told there was a low risk of recurrence but later found out it was actually a grade two tumour. At this point, samples were taken and included in the 100,000 Genomes research project. (Link on website to the project page)
After surgery, healing took a while. I had a deep pain in my hip again so I was referred for an earlier scan rather than waiting for the planned 3 month check-up.
I had horrible pain in my hip and I thought something was wrong. I do have another condition where new bone starts to form where it shouldn’t, this is called Hereditary Multiple Exostoses (HME) and when I was younger I had to have surgery to have bone cut out of my leg.The tumour I had removed did encompass a bone spur. Since then, I have had other bone spurs and my doctor has had all the known ones checked.
I have lung scans every three months and I was told it was unlikely to metastasise but since then I have received a letter saying there's a high risk of recurrence.
“If surgery goes wrong you’re screwed! Chemo doesn’t work for chondrosarcoma. If it does come back I have very little options”
I was referred to a physio after my surgery, but when I first tried the physio the scar opened. My mobility is limited and I struggle when I would go out for a long time and I felt tired and I get flu like pain and aching all over my bones since surgery. I also keep getting chest infections.
I felt depressed and helpless and had counselling. People would stare at me, when I was using a wheelchair I got accused of just trying to claim benefits. I lost a lot of friends during my diagnosis and treatment, they couldn't cope seeing what I was going through.
My advice to others would be to listen to your own body, if you think something is wrong, push. Personally, you think that you are being annoying, but if left, it can be dangerous and you should never forgot about your mental health and wellbeing.
The not knowing is scary and what the Bone Cancer Research Trust do is amazing!