COMMONS

Funding for brain tumour research web forum

Has a brain tumour affected your life in any way? Following an e-petition, which was started on petition.parliament.uk and reached over 14,000 signatures, the Petitions Committee is investigating the subject of funding for brain tumour research, and wants your views.

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

 

1106 Responses to Brain tumour research web forum

Jenny Miles says:
October 30, 2015 at 07:33 PM
My Brother was diagnosed on 13 April 2015 with a GBM Grade 4 brain tumour. He is 46. He has a wife and a 3 year old daughter.

The diagnosis only came after several trips to his GP and me taking him to A&E on two consecutive weekends (both times, we were sent home without seeing a Dr).

He had surgery to remove as much as possible on 30 April and the tumour was almost the size of a can of coke!

I feel diagnosis should have happened sooner. This devastating disease is the biggest cancer killer in people aged 40 and under. 1-2% of money raised for cancer research is simply not enough to have any hope of finding a cure for such an aggressive cancer as this.

PLEASE please do something so that people can survive this in the future. Thank you for listening.
Kathleen Keatley says:
October 30, 2015 at 05:41 PM
I am currently in the final year of my PhD at the Brain Tumour Centre of Excellence at the University of Portsmouth, studying Glioblastoma multiforme. I am incredibly lucky to be working in an environment populated by scientists passionate about furthering brain tumour research. It is however very apparent how underfunded this field is and that a lab dedicate to this research is not the norm.
Funding is disproportionate to those affected by this disease, with only 1% of cancer research spending being dedicated to brain tumour research. The outcome of this on patients and families is clearly evident by the many heart breaking comments on this feed from friends, family members and brain tumour patients themselves and is something we witness first hand when patients and their families visit the lab. From a PhD students point of view, although there are many of us young researchers who want to make a difference in this field, many of us are forced to move to other areas of research or other countries due to lack of funding. Without the brilliant charities who desperately try to bridge the funding gap critical research would further lag behind.
As a young scientist I hope that I will be able to stay within and contribute the field of brain tumour research.
Peter Realf - Part 1 of 2 says:
October 30, 2015 at 05:17 PM
My name is Peter Realf. My daughter Maria Lester (nee Realf) began the e-petition concerned about a lack of funding for brain tumour research, (that the Petitions Committee is now reviewing,) to mark the first anniversary of Stephen’s death. Please let me share with you some background information about my son.

After the birth of my two wonderful daughters, in 1980 and 1982, six years later my son Stephen was born completing our happy family. While I confess I was never really as enthusiastic as my daughters were about playing with Care Bears or My Little Pony, I did share Stephen’s enjoyment of building model aircraft as my son grew older.

At the age of 13 on a family holiday in the Lake District, Stephen saw several fast jets undertaking low flying sorties, and in that instant vowed to become an RAF pilot. Having established the level of academic achievement needed to be admitted to flying training, he set about his schoolwork with a quiet determination to achieve his goals. At the age of 17 yrs he was selected as aircrew and underwent the gruelling 32 week Officer training course, graduating as the second youngest Officer in the RAF at the time, aged 18 years old. A few months later he began his flying training, and loved every minute of it, going solo after 10 hours tuition, before he’d even passed his driving test.

Stephen was truly “living his dream” – flying by day, and enjoying the sports and banter that came with living in the Mess with young like-minded friends and colleagues.

All that changed in April 2008 when after a five month spell of having occasional “pins and needles” in his right arm he was finally given an MRI scan and diagnosed with a “benign” Grade 2 Astrocytoma. Overnight he lost his authority to fly, drive a car, and with it his independence. He was signed off work for two years and had to return home. Rapidly, it became clear he would most likely lose the career he had worked so hard to achieve, but what was not clear to us all at the time, was that he would lose his life too.

After diagnosis things moved quickly, and Stephen elected to have an awake craniotomy to give the neurosurgeon the best possible chance of removing as much of the tumour as possible and carry out cognitive tests during the operation, thus avoiding sensitive speech centres near the orange sized tumour in his left temporal lobe. Knowing nothing about brain tumours and the devastating impact they can have, we were very shocked when the neuro-surgeon announced “I’m afraid your tumour will re-grow, turn more aggressive, and will kill you” at a post-operative meeting. At the age of 19 our bright, funny, amazing young man was being told he had 5 to 7 years to live. How could this be? No hope? Surely the talented Doctors and Surgeons at this top teaching hospital could do something to change this prognosis? No - they couldn’t!

What caused Stephen to have the tumour? We don’t know, as the cause of brain tumour growth is unknown? Surely in the 21st Century this can’t be so? Sadly it is.

If as a society we know so little about brain tumours, how much research is being done to find a cure, improve survival rates and relieve the suffering? My research since Stephen’s diagnosis indicates nowhere near enough!

After less than two years, the 20% of Stephen’s tumour impossible to remove during his neuro-surgery started re-growing. Once again, the family were devastated and Stephen was left to dwell on his future – or lack of it.

Six weeks of radiotherapy were scheduled, followed by weeks of chemotherapy his body couldn’t tolerate, meaning on each of the three occasions chemotherapy was begun, the prescribed course of treatment had to be abandoned after 3 or 4 doses. Having lost his hair, and an interest in food, it was truly heartbreaking to see my young, previously fit son who could run 12 miles with a military Bergen on his back, now being unable to struggle the ten feet from our bathroom to his bedroom.
Peter Realf - Part 2 of 2 says:
October 30, 2015 at 05:16 PM
I was immensely proud of how, despite all that was thrown at him, Stephen kept his smile through each new setback – I don’t know how he did it. Nevertheless, this cruel disease robbed him of his life, and he passed away in August 2014, having just turned 26. He left behind a large circle of family and friends deeply affected by what they had witnessed happening to him. Stephen seemed to touch those medical professionals who worked with him too, and we are grateful to so many of them for the care and sympathetic consideration they showed him. How hard must it be to tell a patient we have run out of options and there is nothing more we can do for you? I’d like to record my thanks to them here.

That is Stephen’s story, but as you can read in over 1,000 entries on your
Website, sadly and unacceptably, our families tragedy is far from unique. It is unlikely that anyone reading those stories could fail to be moved by all that has been shared with the Committee, and my hope is that it will fire up a determination in all concerned that this situation must be improved and quickly.

The nature of this disease, that strikes at the very part of the body that make us all the individuals we are, is hugely devastating. How much longer is the Government going to allow it to be so woefully underfunded? The larger Cancer charities too have a role to play here, but Government cannot allow this situation to continue where survival rates for brain cancers remain largely unchanged during the last 40 years. More funding is required for research, and it is needed now.

I am very grateful for the work the Petitions Committee are undertaking in reviewing our families e-petition, and especially in starting the Inquiry. Please carry out your inquiry and allow sufficient time to hear evidence from patients, families, charities, researchers and medical professionals alike, then make representations to the Government to secure the change needed.

Stephen once told me he just “wanted to make a difference” with his life. With your help and support he could still do that.

Thank you.
Claire Gilsenan says:
October 30, 2015 at 05:10 PM
I have been living a nightmare with a so called 'incidental' pineal cyst. Headaches and migraines every single day for 3 years. With NO other reasons. I have been dismissed by doctors, neurologists, neurosurgeons. The literature in the UK on pineal cysts is not up to date and these so called medical experts only know to go by them. In the USA these cysts are acknowledged and operated on to give people their lives back. I feel mine has been taken from me, I can no longer do the job I loved and it causes problems with bringing up my children as I never feel well. Please please look into proper treatment of these cysts. I am not alone in my quest, I know there are many other sufferers in the UK
Rebecca Mather says:
October 30, 2015 at 05:02 PM
If we look back on the last 50 years of research, breakthroughs in brain tumour treatments are few and far between; we have made such little progress. There are some therapeutic challenges to overcome, but one should not be lack of funding.

I currently work as a brain tumour research PhD student in a laboratory funded by brain tumour charities. These charities work tirelessly to drive research in order to partly compensate for the lack of government funding. Charity work is invaluable to us, but we are moving far too slowly as researchers. We are at a major disadvantage. So few scientists can pursue brain tumour research as a career path, so our teams remain small. To add insult to injury, scientists who do have brain tumour research training are often driven out of the field due to its chronic lack of funding to find work in better funded cancer fields or in other pathologies.

I have seen the devastation brain tumours cause to patients, their friends and families, including my own. Driving research will see breakthroughs in treatment and save lives, but this cannot happen without funding.
Amanda Crossley says:
October 30, 2015 at 04:49 PM
It is vital that funding for brain tumour research goes ahead! If it could save one more adult or child from entering this rollercoaster of a life and the devastating effects and tradgedies that occur to an ever increasing number of patients and their families ... Why should it just be the army of people running and raising money in charities to raise this much needed money for research ....
Carolyn Chaplin says:
October 30, 2015 at 04:39 PM
I am currently caring for my Father (52) who has a grade 4 brain tumour (Glioblastoma). He discontinued chemotherapy because it made him so ill and the oncologist was unable to say if it was actually making any difference to the tumour. On a recent hospital visit I picked up a leaflet on Brain Tumour Research. I had not realised until reading this leaflet just how poorly funded the research is. Brain cancer kills so many, the research should be far better funded.
Denise Nixon says:
October 30, 2015 at 04:35 PM
We lost our beautiful 42 year old daughter on 22nd May to a malignant brain tumour, she left a loving husband, a 4 year old little girl and a 2 year old little boy, absolutely heartbreaking for us all and her 2 siblings, an utter tragedy, please help to find a cure for this terrible disease
michelle bailey says:
October 30, 2015 at 04:21 PM
without the amazing consultants and surgeons that operated on my daughter who was 16 months old she would not have been here today. She had a very rare brain tumour but luckily her consultant had seen it before in Canada whilst training over there so knew how to deal with it. without his expertise and the fact he had trained elsewhere ( only a handful of this type of tumour had ever been seen) she would not have made it. Today she is 9 and I am thankful everyday but if more funding was available they would know more about the types of brain tumours and how to deal with them. We got lucky!!! Please please fund more research......