She shares her story to help and inform others who have been diagnosed with this rare bone tumour.
I was in my late forties and suffering with backache. I went to see my GP, but was dismissed as a middle-aged woman with back pain and prescribed anti-inflammatory painkillers. They did nothing to help ease the pain.
I was eventually referred to a musculoskeletal physiotherapist, who diagnosed me with piriformis syndrome.
I struggled on as best I could, and even made several appointments to see an osteopath, but nothing helped with the pain. In desperation I went to see a different GP, with the intention of going to the A&E department at my local hospital if my concerns were not taken seriously.
At this point it felt like the pain had shifted, and I knew that something was seriously wrong.
It turned out that the compression from the tumour and the inflammation had caused early-stage Cauda Equina Syndrome (CES), a dangerous compression of the spinal cord, and I was considered about 24 hours from permanently paralysis.
I was sent to the A&E department of Charing Cross Hospital where I had an urgent MRI scan. I was told there was a large lesion at the base of my spine, but they did not know what it was. I was admitted onto the cancer ward as they thought it was metastatic disease.
I had more tests and more scans and the team at Charing Cross Hospital realised it was a primary tumour, so a few days later I was referred to the Royal National Orthopaedic Hospital in Stanmore. It was at RNOH that I was finally diagnosed with a giant cell tumour of the sacrum — a rarer and challenging location to treat of an already rare disease.
It is often discussed amongst sacral Giant Cell Tumour of the Bone patients that the route to diagnosis is often brutal. The difficult diagnosis you are presented with mostly refers to severe outcomes and a challenging prognosis. I prepared myself to be told I had a life limiting disease or would face life challenging risky surgery that would leave me in a 'highly morbid state', a terrifying phrase to hear.
Looking back, it was essential I ended up being treated by a specialist sarcoma team with experience of spinal surgery and oncology. In my case, this was the London Sarcoma Service under reassuring expertise of RNOH London for surgery, and University College London Hospital (UCLH) for oncology.
Knowledge is power, and so for me taking time to learn about my disease has been important in helping me advocate for myself. It also helped me manage the decision-making process about what treatment would work best for me.
I ended up choosing to take a medical route, staying on the relatively novel drug denosumab, with known and even more unknown risks for the unusual dosage I would be on. But I'm glad to say this has worked very well for me.
I would advise any patient deliberating difficult decisions to consider which treatment processes you are willing to endure and what outcomes you are willing to live with.
In all the endless medical case histories I read I longed for the voice of a patient. I eventually found it in patient support groups rather than clinical literature. The Giant Cell Tumour of the Bone support group I eventually joined has been amazing! The empathy and knowledge is impressive, those people became like a second family to me.
I always suggest newly-diagnosed patients check out forums run by the Bone Cancer Research Trust, Sarcoma UK, or patient powered research from the Giant Cell Tumour of the Bone support website for good quality information.
One of the most difficult things to manage with a Giant Cell Tumour of the Bone is that it is a very niche disease with cancer-like behaviours, considered destructive and which can spread to the lungs, but is technically not a cancer.
The confusion this causes with family and friends can be a strain, with misunderstandings about the seriousness of the disease.
The language around illness comes with lots of baggage and assumptions, and with rare diseases that insight and knowledge amongst the general public will be limited, which is far more impactful.
I regard getting the language around my disease right as an act of self-care.
So, following the World Health Organisation summary of Giant Cell Tumour of the Bone, I prefer to call it an 'intermediate tumour', which I happen to have in a challenging, hard to treat location. I have also heard it called a 'bone eating disease', which also works for me. Living with a rare, misunderstood disease is often the hardest part of this.
Anne-Marie from May/June 2018, who was very frightened, in a lot of pain, who felt she was in an insurmountable hole, would be amazed to see me now. Still alive and still mobile.
She would be surprised I came through it. She would be very surprised I have chosen to live with a tumour rather than have it removed, such are the dangers of surgical removal, and that I would be able to make peace with this. She would be astonished that I have kept working, and delighted I bought some hiking boots and have managed to use them.
Donate now (This link opens in a new window) More about Giant Cell Tumour of the Bone