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The cost of surviving cancer – a parent’s view

Posted Mar 12 2013 12:00am

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.

We are often told of the remarkable 80 per cent survival rate for children with cancer. It highlights how research has transformed the outlook for many types of childhood cancer (such as the leukaemias) – but other types (such as neuroblastoma ) are still in desperate need of progress.

And we can’t forget that around 20 per cent of children diagnosed with cancer will still die.

And it skates over the tricky issue of whether survival is always a thing worth having – whatever the cost.

The immediate price Amy paid for her life was distressingly high. Our previously bright, lively and completely normal nine-year-old was severely disabled by the tumour and its treatment. Brain swelling after surgery left her unable to communicate, swallow or move.

To put it bluntly, she was a wreck. All she could do was dribble. It was only a sixth sense that she was ‘still there’ inside her frozen brain and body that gave us any hope. She was given a 50-60 per cent chance of survival.

Rehabilitation was a lengthy process and she had to relearn all the skills we had taken for granted – swallowing, eating, speaking, moving, continence. Her education began all over again at a special school. We felt we had lost the child we knew, and determination to get her back became the driving force of our lives. For me, it became a full-time job.

But it was the most rewarding job I have ever had. Amy worked her way back into mainstream school where she gained her A-levels, and has to a great extent regained many of her lost skills. She has however been left with complex disabilities relating to her speed of processing, cognitive function, memory, balance and coordination.

She would love to work – and I remain absolutely convinced of her ability to do so – but jobs are elusive for disabled people in a recession and finding an employer prepared to make the necessary adjustments for her is proving depressingly difficult.

Amy’s cancer didn’t come back, and we have been very lucky in that respect. Like all childhood cancer survivors she has a higher risk of further cancers later in life – at least in part because of the cancer treatment she received.  Other long-term effects include daily injections of growth hormone, treatment for an under-active thyroid, and permanent hair loss at the back of her head: all from radiotherapy.

I itemise these negative impacts not to shock or frighten, but to challenge any impression from stand-alone survival statistics that childhood cancer is practically cured and that the job is almost done. The job is nowhere near done. In fact, treatments for some childhood cancers, such as brain tumours, have remained unchanged for decades. Survival rates have improved but far too many children are still dying.

Cancer is a leading cause of death in children .

It’s a bigger killer than many of the things parents are almost irrationally paranoid about – meningitis, murder, swine flu, and so on. It only takes one child in the nation to be killed in some unfortunate medical circumstances for the press and public to erupt in a frenzy of urgency about changing things to ensure it doesn’t happen again.

Yet every year in the UK, around 1600 children are diagnosed with cancer and about 250 of them die. When it comes to brain tumours, around 400 are diagnosed and around 100 die. Cancer is childhood’s nastiest, most sinister enemy, but as a nation we seem woefully unaware of the symptoms.

It is anecdotal evidence, but as both a parent and in my role as press officer for Cancer Research UK, where I interview cancer patients and parents daily, I have lost count of the children I’ve come across with cancer – particularly brain tumours – who have waited months, sometimes more than a year, for a diagnosis. By the time they arrive on the oncology ward they are bristling with red flag symptoms – headaches, early-morning vomiting, problems with coordination and balance, and visual disturbances.

No one is saying it’s easy for GPs to spot and refer a child with cancer – after all, most will probably never see a single case throughout their whole career, and many symptoms can be signs of other, less serious conditions.

But we’ve got to find ways to reduce any delays in diagnosis because these delays compromise a child’s chances of good quality survival.

It is a devastating thing to be told as you approach old age, or even middle age, that your life may be cut short by cancer.

But to be given that news for your child is a tragedy in its own league. Believe me, those survival statistics, even if you’re lucky enough to get the ‘Rolls Royce 80 per cent version’, don’t seem anywhere near as sunny when it’s your child. It is like having a gun with ten chambers held against your child’s head and being told it is ‘good news’ that only two of the chambers contain a bullet.

It’s always different when children suffer. It’s why all charity appeals featuring children are usually successful – but parents of children with cancer are left bewildered, frustrated and angry when they find that the resources available to fight childhood cancer don’t match up.  And it’s even harder to bear when we see the millions poured into adult cancer research.

So why isn’t more money spent on research into childhood cancers?

Each time I’ve asked this question, I hear the same valid but hard-to-swallow reasons. Because cancer in children is rare, patient numbers are relatively low. This means that any meaningful clinical research has to be carried out internationally – this is both complex and expensive. It also puts ‘big pharma’ out of the picture because they have no interest in investing in such a small market. And the rarer cancers attract fewer researchers to pester funding bodies for money.

I’m also reminded that children do benefit from the more general research on the basic biology of cells and clinical research in adults, so the apparently small slice of the research pie devoted to childhood research isn’t a true reflection of investment in the area.

None of these points are disingenuous or wrong, but the fact remains that it is now over 13 years since my daughter was diagnosed with cancer, and I’m still hearing the same old arguments. It is time we came up with fresh approaches.

The thing that strikes me most is that they are all very rational arguments, arguments made with the head. They contain none of the sense of moral and emotional outrage that those in the childhood cancer community feel. No sense that it is an abomination, a violation of the natural order of things, for our children to go to the grave before us.

It has often struck me how the older generation are the ones who are most appalled by the cruelty of childhood cancer. I will never forget the queue for radiotherapy : a row of pensioners, and among them, in her wheelchair, my daughter, the youngest patient by decades. Many of those old people were moved to tears just at the sight of her.

My parents both died of cancer; my mum of pancreatic cancer at 57 and my dad of peritonitis caused by undiagnosed bowel cancer at the age of 75. Mum died when Amy was 18 months old, so never knew what life had in store for her granddaughter. Dad was alive and helped us through it. He once said to me that he would have donated his own brain if it could have saved Amy, and I know he meant it.

My father-in-law has been treated for prostate cancer . Like many of his generation he doesn’t ‘do’ illness, and bore his diagnosis and treatment almost silently and with great dignity. He told me he felt ‘like a fraud’ and could hardly think of himself as a cancer patient, having seen what his granddaughter went through.

More than three out of five cases are diagnosed in people ages 65 and over. That’s because we build-up more and more genetic damage over our lives , which is the underlying cause of cancer.

But again, childhood cancers are different – they aren’t always ‘mini versions’ of their adult counterparts. In some cases cancer starts in the womb as a child is developing. How much could it inform and advance our understanding of cancer if we focused more of our research on investigating these very fundamental changes that cause cancer as we develop? If children benefit from adult research, adults can benefit from children’s research. It works both ways.

We are used to hearing the voices of the different cancer ‘lobbies’, fighting for increased investment in their type of cancer. The volume of the voice usually matches the numbers involved, which is why you will hear more about breast cancer than most other types – if affects far more people, damages far more lives.

Children have no voice when it comes to fighting their own patch; they only have their parents: parents who want to see a renewed sense of urgency in tackling children’s cancer.

When I was in hospital with Amy at one of my lowest points, I came across a short book. It was written by an American, but I don’t remember its title. It gave me some useful information, but the thing that stuck in my head the most was this line: “You are your child’s advocate.”

Parents of children with cancer are united by many things.

We have all mentally rehearsed our children’s funerals; stood by the graveside and smelled the earth, heard the rattle of the first handful of dust on the coffin lid.

We have all lived off dodgy sandwiches from the hospital concourse, and slept in a campbed on the ward with not even enough privacy to cry.

We have all kept our little hospital bags of soft hair from the treasured heads of our darlings. And every one of us is saddled with a lifetime responsibility for being our child’s advocate, even if they’re dead.

There will always be parental voices, criticising, pushing and shouting for more investment. We are our children’s advocates, doing our job.

We need to see more money invested on research into childhood cancers, and more acknowledgement that they are a ‘special case’ for all the reasons outlined above. Yes, there are obstacles, but new ways need to be found to overcome the obstacles and kick-start a new era of progress.

Researchers themselves need to see childhood cancer through new eyes – not as a minority area but as an untapped arena for exciting and groundbreaking research where new discoveries could translate into progress for all cancers, not just childhood cancers.

Some of the most exciting developments in cancer research have come from the paediatric community. They were the first to develop combination chemotherapies , they are experts in complex international studies, and their patients cope with treatment regimes of an intensity that would kill an adult. There is so much to be learnt, and so much to be built on.

Large and small organisations need to work together to achieve these aims, pooling their energies to create political pressure for improved funding and greater awareness of symptoms.

And we need to recognise that dealing with cancer isn’t all about ‘surviving’ the cancer, no matter what the collateral damage. For the very young, preserving quality of life is at least as important as preserving life. New, kinder treatments are desperately needed for children; treatments that don’t leave such a devastating legacy and that don’t leave parents like Sally Roberts running scared.

Jane

  • Jane Redman is a regional press officer at Cancer Research UK
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