A campaign for earlier diagnosis of bone cancers is being backed by parents who have experienced the heartbreak of losing a child and a mum whose son is now in remission.
Faster action by doctors could have potentially changed the outcome for Ewings Sarcoma victims 10-year-old Adam Dealey and the Gazette’s own reporter Jonathan Saunders.
But both were repeatedly misdiagnosed by GPs – Adam was told that discomfort in his ribs and back were growing pains and football fan Jonathan was given painkillers for groin strain.
Adam’s dad John – a trustee of the Bone Cancer Research Trust – said quicker treatment could have saved his son’s life. “Without a shadow of a doubt he would have had a better chance,” he said.
The trust is leading the call for earlier diagnosis during the current Bone Cancer Awareness Week.
A new report has revealed that primary bone cancer survival rates have not improved in the last 25 years, unlike other cancers.
It took around nine months for Adam, who lived with his family in Boxmoor, to be diagnosed with Ewings Sarcoma, after which matters went downhill rapidly for the youngster. He died in July 1994.
Jonathan also waited around a year before being being given an accurate diagnosis, although his condition was more complex because he was suffering from a rare strain of the cancer. It was a blood test that eventually flagged up the disease but by that time Jonathan was seriously ill. The 24 year old lost his battle in September 2012.
His dad Gerry, of Tring, said: “I think in hindsight it is very easy to be critical but I think it is justified in this case, I don’t think enough was done.
“One would have expected this to be diagnosed much, much quicker than it was. Would it have helped? It may. I think it would have lengthened the time he had left. In general the rule of thumb is the earlier these things are caught, the better. We might still have the lad around today even though it may not have completely forestalled it.”
Bennetts End mum Linda Wigg refused to give up when her son James was just given painkillers.
Explanations for pain in his leg included growing pains and Osgood-schlatter disease.
“They said he would have to take painkillers when doing exercise,” said Linda. “In my head I thought: ‘He’s 13, why would a 13-year-old keep taking painkillers to do exercise?’
“The next time James was playing football he came off during the game and said: ‘I can’t run any more, the pain is awful’.
“So we took him back to the doctors and we saw a different GP who sent him for an X-ray. The X-ray itself can’t show a tumour but what it can show is there is something there that shouldn’t be that they need to investigate.”
The X-ray was followed by an MRI scan that revealed a large stage three osteosarcoma tumour. At this stage it had been around a year since James first started suffering leg pain.
Linda said: “A simple X-ray at the beginning of all of this and that tumour wouldn’t have been so big and he wouldn’t have gone through all the pain.
“I know doctors might say they can’t do that for every child that comes in with what they would call growing pains.
“But for me, as a mother that has gone through this, why not, if that saves someone from going through what James went through I would rather that.”
After chemotherapy and surgery to remove his left knee which has been replaced with a prosthetic one, 16-year-old James, a John F. Kennedy School sixth form student, is now in remission.
The research trust has teamed up with the Royal College of GPs to launch a specialist e-learning module this winter to help doctors spot the telltale symptoms which would help them diagnose patients earlier.
Professor Andy Hall, of the trust’s independent scientific advisory panel, said: “Primary bone cancer is, thankfully, very rare but it is vital that it is diagnosed early to give patients the best chance of survival.
“The average length of time it takes for a primary bone cancer patient to receive a correct diagnosis is 16 weeks from the time when the patient first noticed their symptoms. A simple X-ray, performed early, can make all the difference.”
Bone Cancer Awareness Week runs until Saturday. Visit www.bcrt.org.uk and www.adamdealey.org.uk for more information.