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.
Today’s report shows huge improvements in radiotherapy services are needed
For several years, Cancer Research UK has been calling on the government to invest in improvements to our radiotherapy services across the UK. At the National Cancer Research Institute conference this week, the Department of Health has published a report on radiotherapy services in England.
We’re really pleased – our Voice for Radiotherapy campaign urged the Government to publish an action plan to give an update since the last one was published 5 years ago. The report builds on the Prime Minister’s recent announcements on radiotherapy, and will hopefully help to drive progress across the service. For the very first time, this report allows us to use real-time data to compare services across England to see how well we’re doing.
It’s not a very pretty picture.
Huge improvements are needed if we are to ensure that the right patients are getting the right sort of radiotherapy. Over the next four years, activity must increase by two-thirds if it is to keep pace with the needs of UK patients. And much more of this should be advanced radiotherapy, such as intensity modulated radiotherapy (IMRT) – which targets treatment more closely to the tumour, sparing healthy tissue – and image guided radiotherapy (IGRT) – which tracks the tumour’s movements to ensure the radiation is hitting the right spot.
By 2016, we will need to double the number of linear accelerators (the machines that deliver radiotherapy), both to match increases in demand and to make sure some of the UK’s ageing machines are replaced on schedule.
Radiotherapy, the ‘forgotten hero’ of cancer treatment
David Cameron announced a new ‘radiotherapy innovation fund’ this week. He’s making £15million available to the NHS in England so that by April 2013, more cancer patients can benefit from advanced radiotherapy like intensity-modulated radiotherapy (IMRT).
The money has become available because the Government’s Cancer Drugs Fund - set up to make new cancer drugs available to patients who need them – is under budget.
So between now and April 2013, radiotherapy centres in England will be able to bid for this money to boost their services. The Prime Minister also guaranteed that from April all patients in England will always be able to access the radiotherapy treatments that their doctors think they need, including advanced radiotherapy such as IMRT or stereotactic radiosurgery, regardless of where they live.
This is fantastic news, for several reasons.
In response to recent media stories, Richard Evans, chief executive of the Society and College of Radiographers – one of our partners in the National Radiotherapy Awareness Initiative – asks whether calls for more ‘Cyberknife’ radiotherapy are justified.
Richard Evans is the CEO of the Society and College of Radiographers
Not so long ago, people were predicting that radiotherapy as a cancer treatment was finished. Yesterday’s technology. Drug treatments were going to take over and radiotherapy would be obsolete.
But those of us in the field have seen astonishing developments in radiotherapy delivery systems, and unprecedented accuracy in treating and curing cancer while minimising damage to healthy tissues.
Far from obsolete, cancer treatments with radiation are essential in up to half of all cancer cases. Cure rates and cost-effectiveness are far higher than is achievable with chemotherapy on its own.
But we have been unable to achieve the recognition that radiotherapy deserves. Politicians, the media and the public at large remain wary.
The result is frustration. Frustration as (for example) millions of pounds are set aside for a “Cancer Drugs Fund” which remains under-spent while radiotherapy services struggle to replace outdated kit and implement the most appropriate techniques.
Frustration that pharmaceutical companies are so effective in publicising and marketing cancer drugs, even those with marginal benefit.
What radiotherapy needs is a product to grab the imagination and put our speciality back on the map. Something that could be marketed as effectively as those chemotherapy agents and a company with the nerve to do it.
And, hey presto, that’s just what we’ve got… and we don’t like it much.
Wendy Powell took part in the early clinical trial
Last week we reported on the success of a major bladder cancer trial, funded by Cancer Research UK.
The practice-changing trial will mean that, in future, fewer of the thousands of patients diagnosed with the disease each year will need their bladder removed, and, in some cases, their womb and ovaries or prostate and urethra too (since these are the areas where the cancer is most likely to return).
Removing the bladder is a major operation with implications for the rest of a patient’s life. As the disease is linked to smoking and around eight out of ten cases diagnosed in patients over 65, some patients are in relatively poor general health when diagnosed and so unable to cope with such radical surgery.
Until recently the only alternative has been radiotherapy. But around a third of patients given radiotherapy eventually relapse with invasive disease and so need to have their bladder removed anyway.
To try to improve things, researchers based at the University of Birmingham and The Institute for Cancer Research in Sutton, funded by Cancer Research UK, have been looking for better alternatives.
It's news time
As ever, cancer made the headlines this week.
We’ve covered all the main stories in our round-up below.
If you want to know more, you can click on the links for more in-depth coverage.
Our 'Voice for Radiotherapy' campaign petition garnered over 36,000 signatures
As 2011 drew to a close, so too did the Year of Radiotherapy.
The aim of the Year, which we’ve blogged about before, was to improve public understanding and raise awareness of this important form of treatment, which receives less attention than cancer drugs, yet cures more people.
We achieved a lot over the last 12 months, bringing the UK closer to having world class radiotherapy services. Here’s a quick run-down of what happened, and when.