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Funding for research into brain tumours web forum

Petitions Committee

This forum is now closed. The deadline for comments was 5pm on Friday 30 October 2015.

Message to forum contributors

Thank you to everyone who has taken the time to contribute to this comment thread. We have been overwhelmed by the number of very moving stories which you have been willing to share with us. Please accept our sincere condolences to all those who have lost loved ones or who are currently suffering as a result of a brain tumour.

All of the responses posted here will be enormously helpful to the Committee’s inquiry and we are extremely grateful.

The Committee will now hold several ‘oral evidence’ sessions to continue gathering information on this issue. It will also hold an informal meeting with those affected and we hope that will include some of you.

The first formal session is on Tuesday 3 November at 2.15pm when the Committee will be speaking to the petition creators and some charities about many of the issues you have raised. You can attend or watch/listen live online.

We hope you will continue to follow the Committee’s inquiry. Please follow the inquiry page for updates, or follow the Committee on Twitter: @HoCpetitions

Huge thanks,

The Petitions Committee team

Return to the funding for research into brain tumours inquiry page

1106 Contributions (since 19 October 2015)
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Total results 1106 (page 5 of 111)

Ruth Foenander

30 October 2015 at 11:48

My mum lost her life to a GBM brain tumour almost 4 years ago at the age of 57. When diagnosed she was given just weeks to live. 17 months later she lost her battle. None of the treatment worked, there was so little that could be done. No cure and no successful treatments. A terrible diagnosis with treatment to cure. More research and better treatment options are desperately needed.

Wendy Fulcher

30 October 2015 at 11:48

When my husband died from a brain tumour I learnt how little was known about the cause of brain tumours and how little funding was invested in brain tumour research. 15 years later this is still the case and despite brain tumours being the biggest cause of cancer death in young people and causing the highest number of years of life lost, less than 1% of national cancer research funding goes into brain tumour research. This is unacceptable - the charities try desperately to redress this shameful imbalance but it needs a concerted national funding effort to give brain tumour patients a fair chance of better treatments. Scientists and clinicians are fighting for the chance to find a cure for this devastating disease but they need the support of government to receive a fair share of funding to research the causes and possible treatments for these patients

Jenifer Baker

30 October 2015 at 11:43

I've been affected by brain tumours both personally and professionally. Personally our son, Stephen, was diagnosed with a grade IV glioblastoma in 2003 aged 22 and died 18 months later. Another young life tragically cut short with ongoing impact and consequences for Stephen's younger brother, other family members, girlfriend and his many other young friends who still mourn his loss. Stephen received only the standard and challenging treatments of the time (little changed today) and was not offered the opportunity of participating in a clinical trial. Whilst highly unlikely to have led to a cure for Stephen this might have extended his life for a period and would have given him hope along the way. Professionally I was the Chief Executive of the UK leading charity - Brain Tumour UK - from 2006 to 2013. Our mission was to provide advice and emotional support for patients, carers and families, to raise funding for research and to raise awareness of the disease. Through daily contact with hundreds of people across the UK through our helpline and our network of patient support groups we were reminded of the agonising challenges of living with a brain tumour diagnosis and the call from all concerned for more scientific and psychosocial research into this complex disease and an increase in the availability of clinical trials.

Sarah Lowe

30 October 2015 at 11:20

Please more funding is needed for research my 43 year old sister is slowing getting worse and it will eventually claim her life.

Tom Greenway

30 October 2015 at 11:07

My son died last month of a medulloblastoma age 28. Prior to diagnosis he suffered excruciating headaches, balance problems, sickness, and hiccups yet GPs and consultants failed to diagnose a brain tumour. As the symptoms worsened he went again to the GP saying he thought he must have cancer of the brain, but the GP diagnosed migraine though acknowledged he could not explain the hiccups despite the symptoms combined being indicative of a brain tumour. Within three weeks his condition became drastic, he was given a scan and transferred that day by ambulance to another hospital for surgery on a Grade IV tumour. The surgery was successful but there followed intensive radiotherapy and chemotherapy daily for six weeks followed by chemotherapy for a further six months to cure the cancer that had spread to his spine and anything that may be left in the brain. Sadly within two months of this treatment ending, which had appeared successful, he deteriorated and cancer of the bone throughout was found - he died. What needs to be done? a) Early diagnosis is essential if treatment is to be successful - GPs need training - their failure to diagnose at an early stage is reported all too often. Public awareness of the symptoms is also required. b) The various types of brain tumour need to be better understood. Research into post-operative treatments developed specifically for brain tumours is required. c) Brain tumour research is relatively neglected - indeed little mentioned despite these tumours being a major killer of mainly our young; this imbalance must be rectified.

Christine Forecast

30 October 2015 at 10:49

Research into bran tumours could also help in other types of cancer research - they should not be seen in isolation.

Mrs Frost

30 October 2015 at 10:44

I do hope the Petitions Committee look favourably on the pleas of so many people on this forum who have had or are having a personal experience of a brain tumour. I cannot fathom how brain cancer seems to have become such a low priority for Cancer Research UK. Maybe because progress has been made in other high profile cancers this generates more funding into those same cancers because it is felt they are getting somewhere. This seems to have created a huge imbalance in the spread of funding across the research into other cancers. This is wrong and we desperately need the government to step in and take some action. Many, many people like me have become disillusioned with Cancer Research UK when we discover that brain tumour research is being grossly underfunded and instead we donate to charities dedicated to this research eg Brain Tumour Reasearch Org. My husband lost his life at age 54 from a malignant grade IV glioblastoma multiforme. This terrible cancer has to become a priority for research, it robs you of your life in a truly cruel way.

Josh Cruikshank

30 October 2015 at 10:38

I had my first seizure during the night of February of this year. My wife, with our four children in bed was clueless as to what was happening. She called for emergency and paramedics took me to the ER. I quickly learned of the brain tumor and went into surgery. We have seen a few doctors, five. Each with a different view, plan of attack. What I am discovering is none really know. My questions are never fully answered. I feel less like a patient and more like a study. Brain tumor research is necessary. We are seeing just how many lives, innocent and beautiful plans for one's future are being ripped apart. My goal as a father is to walk my girls down the aisle, to be there for my son as he becomes a man. And as a husband, to sit with my wife, when we are old and look back at a long life well lived and fought for.

Abigail Harrison-Strong

30 October 2015 at 10:35

How do I feel? Best I can come up with below. I was 24 and you were 32, As I stood by and watched brain cancer ravage you, Life became hospitals, and pills and masks, Hope faded with each rise of the larks, Weeks turned into months, which turned into years, All this time refusing to accept our fears, Your body decayed which to watch was beyond vile, But despite it all you never let it take your smile, Then came the last, the end of your fight, And all I could do was stand by as you lost your light, Now 5 years have passed, each as hard as the last, I know one day again we'll be together, I'll get to be with my big brother.

Beth frazer

30 October 2015 at 10:16

I had a pineal cystic tumour removed in June 2015 after fundraising to get to Australia to Dr Teo because it was too dangerous to remove in this country. That was my risk to take and I should've had the option in this country to get it removed as it ruined my life. Benign or malignant, every brain tumour matters.

Total results 1106 (page 5 of 111)