The challenge of spotting cancers in children

Georgia Hillman

Georgia was diagnosed with Wilms’ tumour

One Sunday evening in 2008, after giving her one-year-old daughter a bath, Ruth Hillman noticed Georgia’s tummy felt firmer than usual.

Alarm bells began to ring.

By Wednesday, after seeing several different doctors, Ruth and her husband Ben were told Georgia had a tumour. Further tests showed that it was a Wilms’ tumour – a form of kidney cancer – and Georgia needed intensive treatment.

Georgia’s story is ultimately a happy one – she’s now a healthy five-year-old, and recently started school. Her treatment – surgery and chemotherapy – means she’s among some 33,000 people alive in the UK today who beat cancer in childhood. Although progress in some cancer types has been slow, overall survival rates are now at an all-time high.

But could they be even higher? In the end, Georgia was diagnosed in time, but others aren’t so fortunate. And, as in adults, cancer treatments in children are generally less effective when the disease is spotted late.

They’re also often more intense. As a result, survivors can have long-term disabilities – and with more lives being saved, this has meant an ever-greater focus on how we manage cancers in the youngest members of society.

The problem is that cancers in children are rare, and their symptoms are hard to tell apart from a whole range of more common problems. The average GP will only ever see a single case in their entire career – if at all. And for parents, they may never suspect that an ache or a pain could be something more sinister than childhood’s day-to-day rough and tumble.

In this blog post, we’ll take a look at the issues surrounding spotting cancers in children, and what’s going on to try to improve things.

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Video: Dr Antony Michalski on treating children with cancer

No parent expects to outlive their child – yet, tragically, some do. And although it’s relatively rare, cancer is still single biggest killer of children.

A few weeks ago, Dr Antony Michalski, a Cancer Research UK-supported doctor from London’s Great Ormond Street Hospital, came to our head office to give an engrossing talk about his experience of treating children with cancer.

It’s a fascinating and personal account of his years as a consultant, where he touches on the significant progress that’s been made, but also the huge challenges that remain to ensure as many children as possible survive, and go on to live productive lives:

In one way, the progress Dr Michalski talks about is astounding. The survival rate for children’s cancer has more than doubled since the 1960s and more children than ever are surviving their disease. Now almost three-quarters of children are cured, compared with around a quarter in the late 1960s.  

But “we’re not even close to perfection” when it comes to treatment, he says. This is an issue we’ve written about before – the need to tackle long-term effects of treatment on those who survive. After all, a child who survives cancer has potentially decades of life ahead of them, and we need to make sure these are as happy, healthy and ‘normal’ as possible for them.

How can we do this? Dr Michalski says research is the answer, and we wholeheartedly agree. He’s a passionate advocate of laboratory research and the “great hope of molecular biology” in uncovering the answers we need to make treatment better.

Research is the driving force behind the improvements we’ve seen so far, and will undoubtedly be the driving force behind future advances.

We hope you are as inspired by Dr Michalski’s talk as we were. Please do share your thoughts and comments below.

The cost of surviving cancer – a parent’s view

Amy and Jane

Jane, with Amy as a baby

Being told that your child has cancer is every parent’s worst nightmare. But 13 years ago, one of our press officers, Jane Redman, received terrible news – her daughter Amy was diagnosed with a brain tumour.

Here, Jane shares her family’s story – and her vision for the future of childhood cancer research.

Many of us will have read the recent distressing story of Sally Roberts – the mother who went into hiding with her son rather than put him through radiotherapy to his brain and spine to treat a brain tumour. Terrified of the potential side effects of the radiation, she simply ran away. Her son is now having treatment after a legal battle.

The press and social media have been awash with discussion about her refusal to consent to what experts know is her child’s only chance of life. The medical consensus is that without radiotherapy his cancer would be more likely to recur and he would die.

But only those parents who have been in the same position can really understand how hard these decisions are, how brutal the treatment, and how high the costs can sometimes be.

My own daughter Amy had exactly the same type of brain tumour, a medulloblastoma, when she was nine. She had surgery followed by radiotherapy and we still have her; she is 22 now.

While we never seriously entertained the notion of not signing the consent forms for Amy’s treatment, I’m not going to pretend that it was an easy decision. When the crucial moment came to sign, my husband had to pick up the pen because I was paralysed with fear. Did I ever feel like running away? Yes, I fantasised about it daily. Did I ever regret having agreed to treatment? There was a time, yes. I don’t regret it now, but she was so severely disabled initially that I felt we had sentenced her to a non-life out of desperation not to lose her.

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Clinical trials: Helping more children beat cancer every year

A child on a clinical trial

Clinical trials have helped to save thousands of children’s lives.

December is childhood cancer awareness month, so we thought we’d focus on an area that contributed more to saving children’s lives from cancer than anything else – clinical trials.

More and more children are now surviving cancer, and today there’s over 33,000 long-term survivors of childhood cancer alive in the UK. Clinical trials are at the heart of this progress, testing new treatments or different ways of giving drugs to see if they’re more effective than what’s already available.

In the 1970s, when clinical trials for childhood cancers first started, fewer than three in 10 children with cancer survived. Today nearly eight out of 10 make it.

This life-saving progress is fantastic, but we can’t rest on our laurels. With more than 200 children losing their lives to cancer every year in the UK, we’re still searching for cures. And for those we can cure, the drugs they’re given need to be made kinder and with fewer side effects. This will give them the chance to live full, long lives without a lasting legacy from their treatment.

To help bring hope for the future we’re running clinical trials for children with cancer across the whole of the UK. Here are a few we’ve recently launched.

Finding better treatments for neuroblastoma 

Each year around 100 children in the UK are diagnosed with neuroblastoma, and many have access to immunotherapy through a Cancer Research UK trial opened three years ago. This new trial is offering immunotherapy to children and young people whose cancer has come back– around half of all cases. Doctors hope that this new trial will mean almost all children in the UK have access to this cutting-edge treatment.

The treatment works by ‘flagging up’ cancer cells to the immune system, so it can hunt them down and destroy them. As well as offering more children access to immunotherapy, the trial will also look at a different way of giving it. Immunotherapy has to be given with a strong pain killer such as morphine because it causes severe pain, meaning patients need to stay in hospital. This trial will see if giving immunotherapy more slowly and over a longer time reduces the pain it causes so children could stay at home while having it.

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“Dear Cancer, I beat you aged eight and today I got my PhD in cancer research”

Dr Vicky Forster in the lab

Dr Vicky Forster at work in the lab

December is Childhood Cancer Awareness month, and it will always be a memorable time for Dr Vicky Forster – but not for the right reasons.

In this inspiring piece for the Children’s Cancer and Leukaemia Group (CCLG) newsletter, Contact, she describes her own experience of cancer as a child and how it motivated her to pursue a career as a cancer researcher. She also tells the story of how a celebratory tweet when she gained her PhD made it around the world. Vicky’s now a scientist at the Northern Institute for Cancer Research – part of our Newcastle Cancer Centre. Thanks to Vicky and the CCLG for allowing us to share her story here.

On Christmas day in 1994, whilst the rest of my family were playing games in the lounge, I was asleep in bed upstairs feeling absolutely exhausted, despite the fact that I had only woken up a few hours previously.  I had been ill for a few weeks with what the doctor thought was a chest infection.  Later that week, when I still wasn’t better, my mum took me to the doctor again who sent me for a blood test.

Vicky aged eight

Vicky aged eight, undergoing cancer treatment

On New Year’s Eve 1994, I was diagnosed with acute lymphoblastic leukaemia and admitted to St. Bartholomew’s hospital in London for a two and a half year program of treatment.   All of my family were extremely shocked about the diagnosis, but we coped – my parents taking it in turns to either be in hospital with me in London, or with my little sister Becky who had just started school back home in Essex.  It was hard being off school for so long at that age, as I really loved being in school, but the teachers at the hospital were incredible for keeping my passion for learning going.

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Childhood cancer awareness month – research, information and more

A child with cancer

It’s Childhood Cancer Awareness Month

Talking about our research and the progress we’re making is a delicate balancing act. We want to shout from the hilltops about the tremendous progress that’s being made against cancer every day thanks to research.

But we’re only too aware that tens of thousands of lives are lost every year to cancer – more than 250 of them children – and even more needs to be done to bring us to a day when all cancers are cured.

Reflecting huge progress over the years, as well as an urgent need to do more to save children’s lives, Childhood Cancer Awareness Month is now upon us. To mark this important time, we’re planning a series of blog posts throughout December to talk about childhood cancer. We want to celebrate the successes so far, but also talk about what more needs to be done to beat this complex group of diseases.

In this first post, we draw attention to the life-saving research we’re funding, and to the Cancer Research UK resources that are available to families.

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The shape of the new NHS – two key documents published yesterday

Ambulances

What will the new NHS Mandate mean for patients?

Since coming to power in May 2010, the UK’s coalition government has begun to roll out some far-reaching reforms of the way the NHS works across England.

Without getting too caught up in their finer details, a key feature of the new-look English NHS is the new NHS Commissioning Board, which will oversee how a whole range of local bodies work together to commission  care for their communities.

And the Government will periodically set the Board’s exact objectives and aims via what’s known as the Mandate, which we discussed here a few months ago.

Yesterday we were at the Department of Health for the launch of the first Mandate, which will set the Board’s priorities for two years, starting from April 2013.

A second document was also published yesterday – an updated NHS Outcomes Framework for the next year (starting in April 2013), which complements the Mandate by providing an overview of how well the NHS is performing.

We’ve been poring over these two hugely important documents, to find out how they’re likely to affect things for cancer patients.  Here’s our first take on things.

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