Bone cancer (sarcoma) - 'It never crossed my mind that I might not survive'

Carol Starkey, 20, from Bromsgrove, Worcs, was diagnosed with bone cancer in her shoulder only three weeks after she started university.  

“It was February 2006 when I first noticed the aches in my right shoulder. I thought it was a pulled muscle and I expected it to sort itself out, but it didn’t. The ache would wake me up at night and I could feel it when I was driving.

“I went to my GP who thought I was studying too hard and that it might be RSI (repetitive strain injury) from using my computer. He told me to take painkillers. The pain didn’t stop and, after a holiday to Sicily, I went back to see him. He sent me for physio, thinking it might be tendonitis. I also had ultrasound and acupuncture but the pain still didn’t go away.

“Then one day, when I was getting out of a swimming pool, my right arm completely gave way. It was really painful and I lost all power in it for about a half an hour.

“My GP gave me a cortisone injection, which he said would keep me pain-free for two weeks which was exactly what I wanted. I was off to Honduras for an expedition that involved walking, backpacking and scuba diving. I coped, but I couldn’t sleep as I was in constant pain and I didn’t have the strength in my arm to lift anything. 

“The GP then referred me to a specialist who said I should have a further course of cortisone. A few weeks later I felt my shoulder pop which was followed by the most excruciating pain. For the first time, I saw a big bulge on the front of my shoulder, which I thought meant it was dislocated. I went straight to A&E.

“I had an X-ray which showed two fractures of the humerus, the bone in the upper arm. The doctor told me it needed further investigation and referred me to the Royal Orthopaedic Hospital in Birmingham.

“After several scans, X-rays and a biopsy, the doctor showed me the X-ray of the lump on my shoulder. When he mentioned the word cancer, it came as a complete bombshell. I'd had no inkling as I'd never even heard of bone cancer. 

“I wasn’t upset by the thought of treatment. Nor was I bothered about losing my hair. I was upset by the fact that I wouldn’t be able to do water sports in the future. It never crossed my mind that I might not survive.

“Although it had taken eight months to get a diagnosis, the treatment began just over a week later. I went to the Young Person’s Unit at the Queen Elizabeth Hospital, Birmingham. It was brilliant and it made so much difference to be with people of my own age. I was very grateful for that.

“I had six cycles of chemotherapy which meant three weeks in hospital followed by two weeks at home for each cycle. I was very sick at first and spent a lot of time in hospital. It took over my whole life.

“The tumour did shrink, but not by as much as the doctors would have liked so I had to have radiotherapy. After the second cycle of chemotherapy, in January 2007, I had surgery. In a three-hour operation, they removed 20cm of my humerus and replaced it with a metal artificial bone. 

“It was difficult at first – I needed a sling for six weeks and my arm was quite weak. It was hard to chop food and to write, but the physio and practising has helped a lot. Now I can cook most of the things I used to be able to.

“I have got back into some sports too. I can swim breastroke and have begun driving powerboats and canoeing again. We do a lot of walking as a family and I've been able to do that again. My fitness came back quite quickly. Sadly, I will never be able to do contact sport because there's too much danger of the prosthesis getting dislodged.

“My advice to a young person who suspects they might have bone cancer is to think of seeking a second opinion if your pain is not being taken seriously. Also, don’t get discouraged by the treatment. The first few weeks of chemotherapy are the worst. After that it gets better."