Below she tells her story of how she rebuilt her life following her diagnosis.
I am a classically trained musician and in 1980 I was living in Dundee and was working as a violin teacher and playing in lots of different orchestras. In the July I developed a pain in my right shoulder, which I thought was a frozen shoulder. The pain became really bad, so I went to my GP, who gave me painkillers. He also later gave me an injection of cortisone in the joint which did not go well, and I was sent for an X-ray. The X-ray showed an exostosis (bony growth), which was quite small at this stage. Towards the end of the year, I could start to feel a small lump on my shoulder blade.
As the pain continued to get worse my GP referred me to an orthopaedic consultant on a non-urgent pathway. The lump grew bigger and became tender in the middle and the pain was so bad, particularly at night, that I was often reduced to tears.
As it was taking so long for my appointment with the orthopaedic consultant, I decided to go for a private appointment in Dundee. The surgeon took one look at my shoulder, and he said he would get me into Dundee Royal Infirmary the following week, I thought to remove the lump. However, I was kept in hospital whilst I had a biopsy and CT bone scan, liver scan etc. There were no MRI machines at this time. I was eventually diagnosed with chondrosarcoma in my right scapula.
I had 4 weeks of radiotherapy in June that year, but this was only to contain the tumour until they decided what to do next. After the radiotherapy, I went back to see my consultant who said I would need to have my scapula removed. In early August 1981 I had a full scapulectomy, 1 year after I had first developed symptoms. It was the first time my surgeon had performed this type of surgery.
I was fortunate in that the bone cancer had not spread elsewhere and after 5 years of annual chest X-rays I was discharged as an outpatient. My first X-ray after surgery showed up a shadow which was worrying, but it turned out to be fibrosis scar tissue probably caused by the radiotherapy.
The orthotics team made various plastic orthoses to support my arm, to prevent numbing etc and I still wear one occasionally to this day. However, they are not that comfortable and there has been no progress in producing anything lighter and more flexible.
As a former violinist I had to give up playing and my teaching job and embark on a new career path. To maintain myself I've paid for private physiotherapy for over 30 years (manual therapy to ease the pain in my rib and rib joints due to my hanging arm).
I had no support of any kind after leaving hospital apart from physiotherapy. There was no psychological support back in those days or information on chondrosarcoma.
It's also very hard for people to understand the impact of a scapulectomy as it's so rare and no-one really thinks about the part your scapula plays in your mobility. It is very debilitating in many ways, but people think you look entirely normal. One positive was my surgeon who was brilliant, as was one of the doctors on the radiotherapy ward.
I have had to change career. I can no longer do things like swim, play tennis etc as my right arm is affected. Even after 41 years I still miss playing the violin. It also affected my ability to play piano. I use my left arm for most things and now it is becoming weaker through overuse, but you just have to adapt.
My advice to other primary bone cancer patients would be to get as much information as possible about treatment choices, consequences of surgery and to get support in place to help you through the journey and after.
If you're not diagnosed very quickly it can spread before you are even diagnosed. In my case I was put on a normal orthopaedic waiting list because the GP didn't think it was anything serious. It was only after the pain had become so bad and I went for a private consultation that I was admitted to hospital. If I hadn't taken this action myself, it could have been another 6 months before I was seen on the NHS waiting list and it probably would've been too late. Also, if I had been diagnosed earlier, they may only have had to remove part of my scapula and I would still have had my career in music.
I was diagnosed over 40 years ago and even in today's world a faster diagnosis doesn't have to involve hi tech. Having the opportunity for a simple X-ray can often be a door opener to diagnosis and it's sad to hear that so many years after my own diagnosis people struggle to even get that.
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