This post is in memory of Willie Logan, supporter of both our friends Dunfermline Athletic and our charity Brain Tumour Action. Willie died in 2009 at the age of 45, two years after his own brain tumour was diagnosed. He leaves his wife, Karen, and son, Ewan, and a host of others who miss him greatly.
You’ll know the names and the stories. John Hartson, whose testicular cancer spread to his lungs and brain. Seve Ballesteros, who underwent multiple neurosurgeries in 2008 for an oligoastrocytoma. Kirsty Taylor, the European Womens Tour golfer, who spent the same year fighting a tumour that just seemd to become ever more serious.
It’s likely that what you’ve read about them has followed the classic style of every celebrity cancer story in the media: diagnosis is followed by the very latest treatment, and then there’s recovery: the famous patient thanks their supporters, pledges to “fight this thing” and cues a host of sporting metaphors about difficult rounds and a full ninety minutes.
Most of my work for the last year has been for the charity Brain Tumour Action and I can confirm what you’ll already have guessed: behind the scenes, things are very different from their press portrayal.
Brain Tumour Action exists to support patients and their families, to fund research, and to provide information and education about brain tumours. We’re nearly 20 years old, but the needs we seek to fill are as desperate as when we started. Let me explain.
Brain Tumours at ground level
Before I began my work with the charity, I believed what most people with no direct connection to brain tumours believe. It’s a cancer, which is bad, but there are new treatments and things are much better than they used to be. You’ll have an op, or perhaps a series of them, then what’s left will get cleared up with a bit of radiotherapy and chemo and good luck.
For sure, survival rates are substantially higher than they were forty years ago when President Nixon declared war on cancer. Even the truly wicked cancers that creep up on their victims, like lung cancer, which can be undetectable until it’s almost too late, are no longer just death sentences.
These days, the average 5-year survival rate across all the cancers hovers at about 50%. However, forty years ago, 5-year survival rates for brain tumours stood at about 10-12%. In all that time, we’ve hardly made it to first base. It’s about 12% now for men, and for women, 15%.
The big dark evil elephant in the room
In the brain tumours world, in the brain tumours “scene” if you will, we tend not to dwell on this. That’s not because of positive thinking, or because people think that they’ll fool their cells into healing with a smile. Nor is it because people regard their brain tumour as a “gift” that has opened them up to truth and life. We don’t dwell on it, because it’s the big dark evil elephant in the room. Every patient wakes up each morning to a forcible reminder of impending mortality. They know. And that’s enough of that.
So it won’t be dwelt upon at length in our newsletters or on our websites. Instead, you’ll find the upbeat stories, the successes, the overcomings of adversity. These aren’t propaganda. People do win the little victories against meaningless, against the cruelty and randomness of what is, so very specifically, their fate. But it can be worse than 12% and 15%..
The survival rate of GBM IV, one of the worst malignant types of brain tumour you can get, is at around 4% after five years. And five years isn’t some kind of finishing post which you get past and then relax in a silver dressing gown. It’s just the standard measure. Brain tumours recur, and can recur at any time in the future. Brain Tumour Action‘s former patron, the late and much missed Fife MP Rachel Squire, died after her tumour returned for a third time.
This means that the stories that don’t make the web or the newsletters or the tabloid press are grim ones. There’s the man with a new GBM IV diagnosis, whom I sat beside during the presentation on GBM survival rates that first brought home what really lay ahead of him. There’s the young women whose tumour is inoperable but slow growing, who “lives life” with gusto now but is who always “waiting” and who “can’t believe when I wake up every morning that I won’t grow old.” There’s the once brilliant professional man, ten years on, whose personality changed totally after his treatment, or the teenager whose operation saved him for a life in a wheelchair, his face hanging limply down on one side. There’s the nurse who, having treated many patients with tumours herself, was diagnosed with five of her own, and knows all too much about what she is in for. Then there are the people whose lives are sustained by a “shunt”, a plastic pipe relieving fluid pressure on their brains, a pipe that can block at any time without warning.
Fortunately, brain tumours are rare cancers. But that scarcity can present problems with diagnosis: the average GP may only see one every seven years. Bad, late or wrong diagnoses are a common topic on our discussion board. But they are not so rare, as a proportion of cancers or as a problem, as they once were.The facts may surprise you. Here they are:
What you need to know about brain tumours:
- Brain tumours are now the biggest cause of death from cancer amongst children. They are a bigger child killer than leukaemia.
- Brain tumours are the biggest cause of death from cancer amongst adults under the age of 40.
- 25% of all cancers now spread to the brain.
- Brain tumours receive a disproportionately low level of research funding – less than £1m per year in the UK, compared to leukaemia’s £14m.
The problems we face
- Brain tumours are very hard to diagnose. A scan alone is usually insufficient. A biopsy – in which a slice of your brain is removed for examination – is often necessary. That, of course, comes with its own consequences.
- The quality of treatment and aftercare varies dramatically across the UK. Edinburgh is, relatively speaking, a good place to be diagnosed with a brain tumour, thanks to a concentration of focussed, dedicated people in the local NHS, and the work of charities like Brain Tumour Action and Maggie’s Centres. So is Birmingham, thanks to people like the brilliant surgeon Garth Cruickshank. Other areas are less well served. This must change.
- Aftercare needs are deep and complex. For instance, there is the transition a child patient makes from paediatric care into adult wards: the teenage years for patients with brain tumours are fraught ones. Patients may need alterations to their home, or help with getting around. Getting a job or a career underway after treatment is hard: the chances are that, during treatment, your financial situation fell away around you – many patients lose their home.
- Because brain tumours are rare cancers, it can be hard for helping agencies like Brain Tumour Action to make contact with people who are spread thinly and living quietly across small towns and villages. Patients still in treatment will probably have to travel many miles from home to receive it.
- Brain tumours are rare cancers, but there are more than 120 varieties. Furthermore, GBM (glioblastoma multiforme) is, in effect, many different kinds of cancer at once. You can imagine how hard that makes even what limited treatment is available.
We don’t know the causes
There is very little solid information about the causes of brain tumours. Indeed, their very scarcity might mean that there are no specific causes and that they are the consequence of random genetic mutation. There is no good evidence to link brain tumours with mobile phone use, overhead power lines or local geographical factors. There is a faint correlation between instance of brain tumours and employment as a firefighter, and suggestions of similar links in the cases of some chemical workers and nuclear energy workers. It is known that chronic immunosuppression can be involved with primary CNS lymphomas, and that cranial radiotherapy can be linked – cruelly, as it’s a treatment, of course – to gliomas and meningiomas. But, for the most part, we just don’t know.
Brain Tumours and Sport
It’s only limited comfort to John, or Kirsty, or Seve, that their cases have done a little bit to improve public knowledge of brain tumours. Improved public knowledge, above all else, is key to obtaining political support to fund research into improved treatment and care for this neglected area. I’ve been throwing what weight I have behind the new Seve Ballesteros Foundation for this reason. The Foundation, like Brain Tumour Action, raises funds for research, and is a partner of Cancer Research UK. That Seve has been able to get this up and running whilst seriously and debilitatingly ill says everything about the man (and I can confirm that he is constantly, heavily involved in everything it does).The opportunities his involvement has opened up are extremely exciting. He might represent a kind of breakthrough for people who have spent years fighting unsuccessfully for public and political attention.
He’s not the only golfer involved. Brain Tumour Action are organising a golf-centred day in autumn 2010 with the assistance of committed Rotarian players from St Andrews. Other sportspeople are on board with us. We’ve had a lot of help from the good people at Dunfermline Athletic. Zuku.com, the people behind the Soccer Pro nutritional supplement, have come forward. And then there’s the host of cyclists, runners and swimmers who have used their sport to get people behind our cause over the last few years.
How you can help
Getting involved with brain tumours in 2010 is like getting involved with cancer research in 1970: you will be in at the beginning. Almost everything that needs to be done remains to be done. If you like pioneer territory, here it is. Furthermore if you want to experience charitable work at a high, policy and decision-making level, this is a good place to start, as the field is largely one of small, cooperative groups rather than one huge faceless body. You can start a voluntary sector career here if you wish.
Here are some straightforward things you can do that will make a difference:
- If you are a blogger, or use Twitter or Facebook, please consider a link to this post and to www.braintumouraction.org.uk if that would fall within your chosen remit.
- If you are a journalist, and would like to write about brain tumours, email me at email@example.com
- If you are a friend or relative of a patient, then let them know about Brain Tumour Action. We are here to help them when they need it, at the times of their choosing.
- If you are experienced in political lobbying, and would like to volunteer your experience to us, email me at firstname.lastname@example.org
- If you’d like to help us to increase public knowledge about this issue in your local area, email me at email@example.com
- If you’d like to raise funds for us, email me at firstname.lastname@example.org
- If you are an Edinburgh resident with strong graphic design skills and would like to bolster your portfolio by volunteering with us, we’d like to see your CV!
And thank you, everyone, for reading.