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Thursday, 17 April 2014

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Ovarian cancer: Time to make a noise about the silent killer

Popular, intelligent and dedicated, Emma Gyles had completed her degree, landed herself a job in the criminal justice department and had a bright future ahead.

Emma Gyles photo
Emma Gyles met her musical hero Paul Weller

But when she returned home from Manchester to celebrate her 24th birthday in March 2008, her health began to deteriorate. She went to see her family doctor in Aspatria, initially with pains in her back – completely unaware it would be anything serious.

Fast-forward a month or so and she was diagnosed with a cyst on her ovary that later turned out to be a tumour. She fought it as best she could but never recovered.

In the years since her death, Emma’s heartbroken family have tried to use their loss to help other women survive. A fund set up in her memory is now paying for a medical student to take a year out to focus purely on more research into ovarian cancer, dubbed the silent killer.

They have to raise £10,000 a year to keep it going but, now into its second year, they are starting to see the shoots of some genuine breakthroughs.

Research into ovarian cancer has not made as much progress as that into many other forms, largely because it is not as common as, for example, breast cancer. It is also much more difficult to diagnose, with no screening programme currently available.

On top of this, latest statistics show that survival rates in the UK are among the worst in Europe – and here in Cumbria they are below the national average.

Throughout the county only about 30 women are diagnosed with ovarian cancer each year. Most of these will be aged between 50 and 70, but as Emma’s case shows, there are exceptions.

In 2010, just a few miles away from Emma’s home town, Maryport teenager Hayley Howard was diagnosed with the cancer at the even younger age of 17.

Having now beaten the disease, she has also raised thousands of pounds for Emma’s research fund.

The man leading that research is Richard Edmondson, a professor of gynaecological oncology at the Northern Institute for Cancer Research in Newcastle, who also treated both Emma and Hayley during their illnesses. He is currently working alongside Anna Grundy, the latest Newcastle University medical student to be funded by the bursary fund.

Dr Edmondson says it is difficult to say exactly why survival rates are lower here, though he hopes that when released, the next set of figures will show some progress.

“Rates are quite variable even throughout the UK. The reasons for that are not entirely clear but last time it was looked at Britain was worse than Europe as a whole. The trouble is we are working on the basis of a five-year survival rate, so you have to bear that in mind with the figures. I would hope they have improved,” he explains.

He adds that catching the disease early is a big factor, however the symptoms list is very vague – for example stomach pains and bloating – making it difficult to pick up.

Dr Edmondson is hopeful there will soon be progress on the screening front, with a trial combining blood tests and an ultrasound, currently underway nationally. Results are due in 2014, after which they may be able to put forward a case for screening 50 to 70-year-olds. However that wouldn’t have helped Emma or Hayley, who would be too young to be called for any kind of screening.

He stresses that it was just coincidence that two girls so young and living so close together developed the disease: “Emma’s case was very rare.

“We do see some of those cases from time to time but I’ve been in the job for 10 years and I’ve probably seen about six in that sort of age group.”

He adds that, although both Emma and Hayley had ovarian cancer, the actual tumours were very different – which is where the research he and Anna are doing comes in.

“Our biggest focus is targeting treatments to the right patient at the right time.

“It’s not actually one disease. There are five or six different cancers that are all focused on the ovary. We are looking at which treatment works best for which tumour and see if we can come up with a test that will match a particular tumour with a treatment that would be beneficial.

“At the moment we tend to throw every treatment at every patient and as a result most patients actually get more treatment than they will benefit from.

“That’s why we are looking more at the actual tumour than the person with the tumour. That will help women of all ages. If it was easier to treat there would be a better survival rate.”

Treatment for ovarian cancer is usually surgery – a hysterectomy – followed by chemotherapy and potentially drug treatment. The test he and Anna are in the process of developing will ensure people get the best option for their individual cancer – and he says they currently have two tests that are showing good results.

Emma’s dad Ken is encouraged by the research and is continuing his fundraising efforts to ensure the bursary scheme can continue in future years.

In the meantime he also wants to raise awareness, both among women themselves and GPs.

“The symptoms of ovarian cancer are not at all specific. Emma originally went to her GP with backache. It wasn’t until she had an operation to remove a cyst that they found out she had cancer.

“What I would say is do not just shrug your shoulders and think there’s nothing wrong. One big lesson that we have learned is to ask questions and challenge them, never take it for granted if your body is telling you differently,” he explains.

“My worry is that doctors are not really aware of ovarian cancer. That’s no criticism of our doctor. They did a brilliant job, but at the end of the day she was treated for a bad back for three to four weeks before we realised it was something else.

“We need to make sure GPs fully understand the symptoms and if they aren’t sure get them to a hospital for tests.”

Rebecca Wagstaff, NHS Cumbria’s deputy director of public health, stresses that just because it’s rare, it doesn’t mean it can’t happen.

“Yes it’s not as common as other cancers, there are only about 30 women diagnosed in Cumbria a year – but that’s still more than one a fortnight.

“It’s therefore important that women, particularly women over the age of 40, are aware of their bodies. People do get bloated, particularly as part of monthly periods, but it’s if you notice any differences or it continues for longer than it normally would. The best thing to do is to keep a symptom diary and if it is persistent then go and see your GP.”

Now back at university studying to be a primary school teacher, 19-year-old Hayley is keen to get on with her life and put her cancer behind her. But she also wants to urge other women not to be complacent – her chances of getting it at the age of 17 were about a million to one, but it still happened.

“Until it affects you, you just think it will never happen. What I would say is if you are worried about anything, go to the doctor. You know your own body. I knew there was something wrong with me. I obviously didn’t think it was as serious as it was but I knew there was something. And if you don’t get the answers you want straight away, pursue it. They are looking at your body for a few minutes, you live in it so don’t take their word for it.

Hayley is also urging people to support the Emma Gyles Bursary. To donate visit www.justgiving.com/kengyles

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