Bob Chaundy talks to Sally Hurst about the trauma of losing her leg to cancer

The first thing that strikes you about Sally Hurst is that she is tall, lanky even, at 5ft 10in. The bone cancer osteosarcoma that led to her losing her right leg is most common in taller people and the young, and is thought to be linked to rapid growth.

Now 29, Hurst is one of 400 young people who develop primary bone cancer each year in the UK and Ireland. Research into the other major form of the disease, Ewing's sarcoma, has shown that people in the UK are more likely to have bigger tumours and are at greater risk of cancer spreading than those diagnosed in France or Germany. With regard to this difference in statistics, the finger of suspicion appears to point to late diagnosis.

Hurst's case seems to bear out this conclusion. In August 2004, she first noticed a dull ache in her knee. She thought little of it at first, but when, after two months, it began to worsen, she went to her GP who prescribed anti-inflammatories. "My knee was giving me a burning sensation, was hot to the touch and not the pain you get with a twist or a sprain."

After three months of frequent visits to her doctor, feeling like a hyperchondriac, she asked to be referred to a specialist. He refused, instead offering her physiotherapy for "ligament damage". The prescribed exercises and ice packs achieved nothing, so the physiotherapist referred her on to a rheumatologist and, at last, she was given an X-ray.

"Even then cancer was only in the back of my mind," says Hurst. "I was thinking I might have to have a cartilage operation." The doctors said that the X-ray looked suspicious and advised her to go to the Royal Orthopaedic Hospital in Birmingham for a biopsy. She didn't know then that it was a specialist centre for cancer.

More weeks went by until her appointment and then, two weeks after her biopsy, she was diagnosed with osteosarcoma. "My mum, dad, my fiancé Pete and myself were called into a cubicle with curtains drawn across. I was extremely nervous. Then, as soon as my consultant appeared with a Macmillan nurse, I knew." As the doctor began with "I'm sorry to have to ... ", Hurst passed out. She came round to the news that she faced nine months of chemotherapy and an operation to remove her diseased bone. It had been more than six months since she had first complained to her GP of the pain in her knee.

When intensive chemotherapy failed to reduce the tumour, Hurst was then told that amputation was her best hope of survival, with 55% of those diagnosed with osteosarcoma still alive five years after the operation. Then came a further blow: she and Pete wanted to have a family but she was told that the chemo would make her infertile.

"I was devastated," she says. "I couldn't take it in. I tried to push Pete away. I wanted to give him the choice that he didn't have to stay with me. I was going to lose my hair, my leg, my chance of a family. Why would anyone want to be with me? I'd be no fun and I thought he was a good man who deserved someone who was fun."

Hurst was petrified as the operation approached. Her knee had been in a plaster cast for weeks because the tumour had caused the bone around it to break. "When the nurses took off the cast, my knee looked disfigured and my leg was swollen and purple. It looked like the result of some medieval torture."

Yet, once the operation was over, there was a measure of relief. She was now tumour-free and there was no sign that the cancer had spread. Her rehabilitation, both physical and mental, could begin.

So why have Hurst and other young people with bone cancer been subjected to delays in their diagnoses? Dr Ian Lewis, oncologist at St James's University Hospital in Leeds, believes that it's down to a systemic problem with our health service. "There's an unpredictable variation in primary care, and no uniform standard of doctors. GPs make decisions on the likelihood of things happening. This might be more economical generally, but when it goes wrong, the results can be tragic."

Lewis was unable to comment on whether Hurst would still have lost her leg had she been diagnosed sooner, because he was not involved in her treatment. However, he says that "a six-month delay should be viewed as unacceptable whatever the excuse". Hurst is now taking legal action against her local GP's surgery alleging clinical negligence resulting in the loss of a limb.

She has written a blog describing her experiences. Talking about her late diagnosis on it, she said: "Everyone around me could see that something was obviously wrong - apart from my GP."

She documented the indignities of walking with a prosthetic limb - "the first thing anyone says when they find out about is, 'ooh, Heather Mills has an artificial leg and hers looks really good ...'" - to how seeing Baby On Board car stickers started to get her down: "What they actually say is, 'Ha! I'm smug and fertile and want you to know about it.'"

But life has continued to improve, not least in the case of her wedding to Pete in 2006. "I'd had this great fear that I'd trip up in the aisle but that vanished when the music started. In fact, I gave my stick to my sister and managed to walk without it for the first time," she says.

Still, Hurst says that thoughts of the cancer remains in the back of her mind. "I get checked up every four months and, beforehand, I get very anxious. I'm told that after five years I'll be clear, though I'll still be checked up once a year."

By way of a post-script to Sally's ordeal, early last year she began to experience the symptoms of what she assumed was the onset of early menopause - a common side-effect of intensive chemotherapy. However, her mother suspected that her self-diagnosis might be wide of the mark and suggested a pregnancy test.

To her astonishment, it proved positive and, last October, after so long believing she would never have children, her daughter, Holly, was born.

bonecancerresearch.org.uk

Thanks to guardian.co.uk who have provided this article. View the original here.