Archive for August, 2009
Join BTUK, Our Own Yahoo Group
If you are a brain tumour patient, family member or carer, and would like to receive and share support with other people who are going through similar experiences, why not join our Yahoo Group, BTUK?
BTUK is a private group, and messages are seen only by its members.
You’ll need to set yourself up with a Yahoo profile before applying to join, if you don’t have one already. But this is easy to do if you already have an email address that you use on a regular basis.
BTUK is a warm, friendly and supportive group of “fellow sufferers” – so come on in.
August 26, 2009
Posted in: BTUK Yahoo Group 
Medicine and Me Patients Conference – “Living With Pituitary Disease
The Royal Society of Medicine is holding another of its series of “Medicine and Me” conferences designed specifically for patients on Monday 12th October 2009. It’s called “Living With Pituitary Disease” and it’s a real opportunity for patients, families and carers to meet leading experts, catch up with the latest developments, ask important questions, discover services they may not have known about, access support and share their experiences.
Most of the audience will be made up of patients and their friends, families, carers and advocates, and a third of the audience will consist of doctors, specialist nurses and others involved in treatment and care of Pituitary disease.
If you book before 14 September, there are discounted “early bird” fees available of £25 for the whole day.
You can find all the details about the conference, including a list of all speakers and full programme, by clicking here.
August 25, 2009
Posted in: News from BTA
Congratulations to Nicole Witts and Her Fundraising Team
Nicole's Team In Freezing Fog on Snowdon
Nicole Witts, who was diagnosed with a life-threatening “benign” grade 1 meningioma, and her team have completed an extraordinary fundraising effort for Brain Tumour Action. Nicole had visited her GP eight times before her tumour was identified – she’d had to rebut a host of often insulting alternative diagnoses – and her eventual operation, which threatened her powers of speech, lasted eight hours.
Like so many brain tumour patients, even her successful operation has left Nicole with permanent after-effects to deal with, including memory problems, epilepsy and the loss of her driving licence, and with her recovery ongoing, she was unable to take part in her team’s successful crack at the Three Peaks Challenge.
The Three Peaks Challenge is an intensely gruelling 24-hour attempt to scale Ben Nevis in Scotland, Scafell Pike in England and Snowdon in Wales, with the driving in between the peaks estimated at a minimum of eleven hours. Nicole’s husband Gary was joined by brother-in-law Steve Rock and friends Matthew Pearcy, Keren Millia and driver Creighton Varney.
Nicole embarked on a remarkable round of consciousness-raising, publicising and campaigning to support the bid. Her media achievements included full-length articles in both the Leighton Buzzard Observer and the national News of the World.
Nicole Witts in the News of the World
Nicole also attracted interest from the television magazine programme This Morning and from the Daily Mail. She gave talks to schools and other organisations, and mobilised her network to attract an extraordinary range of sponsors and donors.
Fundraisers like Nicole provide the funds, the publicity and the momentum that will surely mean one day that people no longer have to undergo experiences like hers. With any luck, her media work will have taught lots of people about a cancer that is still very little understood or known about, and enabled some to make potentially life-changing visits to GP or hospital to get checked out. And the work and commitment of Nicole, Gary, Steve, Matthew, Keren and Creighton inspire us all to work and fight on until the job is done.
Deepest thanks and gratitude to Nicole and the team from everyone at Brain Tumour Action. Congratulations on an extraordinary job done.
August 21, 2009
Posted in: News from BTA
Eye Tests Can Help Reveal Undiagnosed Brain Tumour
Brain Tumour UK are encouraging people to take regular eye tests in an effort to increase the chances of tumour being caught early.
BTUK estimate that from the  16,000 people diagnosed with brain tumours in Britain each year, up to one third could be spotted through a routine eye test.
‘Brain tumours may cause swelling of the optic nerve, which can appear large and pale,’ says Trevor Lawson of Brian Tumour UK. ‘There can be loss of vision in certain areas and headaches. Sadly, in many cases they are picked up too late and in these cases survival rates for malignant brain tumours are 14 per cent.’
Other serious illnesses can also be detected in the same way – such as MS and diabetes, making a simple bi-annual eye-test an essential early-diagnosis tool. In Scotland, these eye tests are free to British citizens and the tests available are more comprehensive than those provided by most health providers worldwide.
August 17, 2009
Posted in: Uncategorized
Petition the Prime Minister for More Brain Tumour Research
Please read, and if you’re a British citizen and agree with it, sign, Dianne Jones’ petition to Downing Street pleading for support for further and extended research into brain tumours. Click here to read and sign the petition.
The petition reads:
There needs to be more research undertaken into investigating the aetiology and treatment of brain tumours, particularly high grade tumours.There are a large number of types of cancers and funding needs to be equitable. However the morbidity and mortality needs to be taken into consideration when funding is allocated. In areas where a lot of money has been spent- eg Leukaemia the prognosis and outcomes have improved over the last two decades. On the other hand with brain tumours this does not appear to be the case. Facts: * More children die from a brain tumour than any other cancer * 3,400 people lose their lives to a brain tumour each year * On average 75% of all childhood cancer patients in Britain survive five years, only 65% of children diagnosed with a high grade brain tumour live for longer than this * In adults, with a malignant brain tumour, only 14% living longer than 5 years * 40% of all cancer deaths in children are from a brain tumour * The number of people dying from a brain tumour has increased – incidence increases by approximately 2% per year * On average it takes longer to diagnose a child with a brain tumour in the UK than in North America. Please support brain tumour research.
The situation with brain tumours and research is this: the problems to be solved, especially where GBM IV is concerned, are perhaps the most complex ever faced by cancer researchers and scientists. Worldwide, comparatively little research is actually taking place month by month compared to other, more widely-publicised cancers. So whilst the battle against brain tumour is being won, it is being won by inches over a terribly long period of time, and in that time, people are dying, we believe unnecessarily, and those that survive are suffering after-effects of their illness and treatment that are far greater than can be acceptable.
Because so little research is taking place, increasing the amount of that research can create a step-change in the rate of useful treatment discovery and testing. For this reason, it is vitally important that charities such as ourselves, joint campaigns such as Brain Tumour Research, and petitions such as this one receive every ounce of support you can possibly give.
August 13, 2009
Posted in: Uncategorized
Long-Term After-Effects Of Radiotherapy
A team led by Dr Linda Douw, from the Department of Neurology at VU University Medical Centre in Amsterdam has published a long-term follow-up study of low-grade glioma patients which set out to track the cognitive and radiological effects of radiotherapy.
You can read a BBC News article on the study here.
The Lancet Neurology summary can be read here.
The Dutch team concludes that the higher ten-year survival rates of patients with low-grade glioma meant that radiotherapy held out considerable risk of lowering brain function further down the road. In most circumstances, radiotherapy should be deferred if at all possible.
Commenting in the same issue of Lancet Neurology, the Mayo Clinic’s Paul Brown and Jane Cerhan argued that improvements in the delivery of radiotherapy over the timescale of the study made its results hard to interpret.
The BBC quotes Dr Jeremy Rees, of Cancer Research UK, who says,
Surgery is generally a preferred option with chemotherapy or radiotherapy coming into play at a later stage, if the glioma progresses.
Continued research and increased knowledge about the disease is enabling us to treat it increasingly effectively while reducing side effects.
August 10, 2009
Posted in: News from BTA
