Emma Callar weighed just five stone when she died in August at the age of 19. In the last few weeks of her life, she told her family that she did not want to live any longer. Her mother, Gill, hoped that one day her surf-mad daughter would be happily married.
Two years ago Emma was diagnosed with osteosarcoma, a rare form of bone cancer, after doctors found a 12in tumour in one of her legs. The family had never heard of the disease which, they were told, affects 30 young people in the UK every year.
They were devastated. But a further shock was in store - news that would shock the whole community. Within weeks, they discovered that their daughter was not the only person with the disease. A few miles away in the village of Lanner, 17-year-old Lauren Lundy also had this aggressive form of cancer.
The Callars have since learned that four other young people in the area have been diagnosed with osteosarcoma. Two have since died. The number of cases is two or three times higher than would be expected in such a small area. Three of the children went to Helston secondary school, sparking fears of a possible link and calls for radon meters to be installed in all schools in the area. The cluster of cases bewildered Emma, who underwent two years of operations and chemotherapy only to discover that malignant tumours had developed in her lungs. As she lay dying, she appealed to her parents to discover why young people were getting this form of cancer. "Emma just wanted a normal life and she was denied that," says Gill. "She realised she was fighting a losing battle. We promised her we would try and find out what was behind the disease and that is what we will do."
An urgent inquiry into the cases has been ordered by West Cornwall Primary Care Trust. It is being carried out by South West Cancer Intelligence Service (SWCIS), with the help of oncologists from Bristol Children's Hospital. Although the inquiry team has yet to report, initial findings suggest that the number is a coincidence and there is no underlying cause. This is of small comfort to worried families who want to know what is killing their children. There is a feeling in the town that something is terribly wrong.
The SWCIS inquiry is not the first to be carried out into a suspected cluster of childhood cancers. Seven years ago, an investigation was launched into a cancer cluster of former pupils of a Sheffield school. Fifteen cancers were identified across three different year groups - more than twice the number normally expected. Among these were 11 different types of cancer, making it difficult to find a common cause, to the frustration of affected former pupils and the community.
Meanwhile, in Cornwall, the SWCIS inquiry has done little to allay the concerns of affected families and the wider community. Local people are calling for a wider investigation into osteosarcoma, which would look at possible environmental causes of this children's cancer.
Their calls are backed by their MP, Andrew George, a Liberal Democrat. "People in Helston are genuinely concerned about what is going on," he says. "It may be a statistical freak but until there is a proper investigation people are going to worry that there is a common cause that has been overlooked."
He has been contacted by former residents of Helston, now living in France, who believe their daughter might have developed sarcoma when they lived there. Little is known about osteosarcoma which is most common in adolescence when the bones are growing fastest. Although a minority of cases are known to have a genetic cause, the cause in other cases is unknown. The only known causative agent is radiation.
Health experts admit that cancer clusters are one of the most frightening and frustrating things a community can encounter. There is a desperation to find a cause; it is easy to suspect everything from electromagnetic radiation to radio transmission lines. Helston itself is the base for RNAS Culdrose, Britain's largest naval air base. Six miles away lies Goonhilly, one of the world's largest satellite stations. The town is also in a region that is known for its high levels of radon gas, from granite rock. Research has shown radon to be the second biggest cause of lung cancer.
The families directly affected admit they are anxious to find a cause. At the same time some are wrestling with anger and self-blame on top of their loss. Gill Callar wonders whether the family should have moved from Berkshire to Helston seven years ago. "We used to come down here for family holidays and we all loved it. Emma was very happy at school but after a while she started complaining of pains in her legs.
"She was 5ft 10in and looked like a model. All she wanted was a normal life. We kept taking her to the doctor but it was two years before we could get a diagnosis. By then the tumour was a foot long. Part of us is wondering whether we should have moved. But if there is something down here that is causing this cancer we should know about it. There seems to be too many cases to be a coincidence."
Hopes that the SWCIS team would investigate possible causes faded at a recent meeting between the inquiry team and affected families when they were told that a preliminary statistical analysis suggested that the high number of cases has been skewed by people moving into the area. The Callars are now putting all their efforts into setting up a support group for other families with children affected by osteosarcoma.
The family of 15-year-old Aimee Plant, who live near the Callars, also want answers. Aimee has had part of her right leg amputated in an attempt to halt the spread of the disease. For the last few months the family have been busy raising money to buy Aimee a cosmetic prosthetic limb.
Susan Plant, Aimee's mother, wants to see more research into the cancer, which she believes might have developed as a result of a bone abnormality, or weakness from a virus. She says: "Aimee has lived in Helston all her life. I don't believe it is anything to do with radon as we have lived in houses with radon meters. Naturally we are very concerned. But we must try not to panic, and listen to the experts. The children that I know of have all been diagnosed at very different times and they are all at different stages. We were lucky. Aimee was diagnosed early on. Hopefully one day someone might get to the bottom of it and understand it a bit more."
Her calls for a proper investigation have been echoed by Andrew George who believes the SWCIS is treating the inquiry as a "cold statistical exercise" and missing a chance to find out more about the disease. "This inquiry seems to be treated as an unwelcome burden instead of a golden opportunity to carry out essential research into sarcoma, which is still hardly understood," he says. "This is an opportunity to explore other factors, particularly where the families are willing and the community is receptive."
For now, people are living in fear and confusion. Pat McGovern, the new head of Helston school, has been contacted by a handful of worried parents who fear a link between the cases and the school. "I have referred people on to the director of public health. Unfortunately, I don't know much about the investigation, only that it is going on. I would like the inquiry team to reach a conclusion and let us know as soon as possible."
The inquiry is expected to be completed in a few weeks, according to Dr Julia Verne, acting director of SWCIS. However, she believes, after checking the scientific literature around the world, and local radon levels, that the cause of the cluster will never be known. "The inquiry team has spent an hour with each of the affected families and explained that clusters can occur by chance. Even if there is a further investigation into these cases it will not reveal the cause," she says.
