BRAIN TUMOUR NEWS FROM THE UK

London Marathon runners raised a record amount of £80,000 for Brain Tumour UK. This record amount is a big boost to their efforts to help people affected by brain tumours.

Brain Tumour UK is the leading, caring charity committed to fighting brain tumours. Personalised support is available online, on the phone, by email and through friendly support groups. Their scientific research improves the quality of life for brain tumour patients and identifies better brain tumour treatments. They raise awareness to change things for the better for everyone affected by a brain tumour.

For more information: http://www.braintumouruk.org.uk

RIP Seve Ballesteros

The death of Spanish golfer Seve Ballesteros on Saturday, 7 May 2011, of an aggressive brain tumour has focused the world’s attention on an illness suffered by many ordinary people in the world. Survival rates for malignant brain tumours are still low, with around one in ten adults surviving for more than ten years.

- Born April 9 1957, Pedrena, Spain -
Seve left his footprint on the sporting world on golf.
There will never be another golfer quite like Seve Ballesteros.
Perhaps no other sportsman quite like him either.
- 7th May 2011, Dies at home in northern Spain at the age of 54
due to respiratory failure.

A sad day and my condolences to the family. A brave battle was
fought. Rest in Peace Seve - You will be missed by many.

Continued research is vital to improving the lives of people diagnosed with brain tumours.

March Is Brain Tumour Awareness Month!

Brain Tumour UK is the leading, caring charity committed to fighting brain tumours. They raise awareness to change things for the better, for everyone affected by a brain tumour.

Personalised support is available online, by email, on the phone and through support groups. They are also involved in scientific research to improve the quality of life for brain tumour patients and identify better treatments.

This is where I send donations to from the proceeds of my EBook 'My Brain Tumour'

If interested, please take the time to visit this very informative site for further information about Brain Tumour Awareness Month.

Are you aware? March is Brain Tumour Awareness Month so spread the word and direct people to this website so everyone can get involved.

Lobby your MP: Join Brain Tumour UK, other charities, patients, carers and healthcare professionals on 29 March at Westminster to present the manifesto for people affected by brain tumours to your MP and join them for a reception at Church House, Westminster. Email them on comms@braintumouruk.org.uk for more information.

Recent Meningioma Webinar - Guest Speaker Dr. Michael McDermott

I don't know if any of you receive info or updates from The National Brain Tumor Society or The Brain Science Foundation but I recently called in to a webinar that was being co-hosted by them both and thought I would share with you a few of the Questions and Answers that were raised that I felt were very useful.

On March 1, 2011, the Brain Science Foundation and the National Brain Tumor Society co-sponsored an informational webinar specifically tailored to share information with Meningioma patients, their caregivers, friends and supporters, and health care professionals.

National brain tumor society and Brain Science Foundation

Guest speaker: Dr. Michael W McDermott from University of California. Professor in Residence of Neurological Surgery.

Dr. McDermott addressed such topic areas as epidemiology, treatment options, and current research initiatives. The webinar was meningioma specific and included a substantial question and answer period, covering a wide range of patient questions.

Question and Answer Session
Q1) After having follow up MRI's on an annual basis for 6 years with no change is it ok to extend the frequency of the MRI to every 2 years?

Answer: Yes - Dr.McDermott felt the lack of growth over that interval shows slow or no growth rate and advised that every 2 years would be ok.

Q2) Can diet/rest/exercise/medication or supplements prevent meningioma reoccurence or slow regrowth?

Answer:Dr.McDermott said he obviously recommended good diet, exercise and rest when needed as the norm but advised that there has been no conclusive evidence to show that these factors necessarily influence an improved outcome. More research required.

Q3) If you have more than 2 separate incidences of benign meningioma could the next one be malignant?

Answer: Two different situations here:
Same tumour that recurs twice in same location.
2 Different tumours in separate locations.

Dr McDermott explained that Benign meningiomas usually recur again as benign menigiomas but what is open to question is whether some of the treatments used to treat the first tumor may in fact influence a higher grade of meningioma in the second tumor. He states that the treatment risk compared to outcome of degeneration is considered very low.

Q4) What might cause multiple meningiomas in different parts of the brain?

Answer: About 5% of patients have multiple meningiomas on diagnosis and it is believed that in the absense of a history of prior radiation or therepy to the face or scalp as a child, this could be a genetic syndrome ie NF2(Neuro fibrosis) gene defect. Patients would be referred to a medical geneticist for confirmation.

Q5) Is there a link between meningiomas and Xray and if so should I be concerned about annual dental xrays and mamograms? (Great Question. One that I have asked myself!)

Answer: There is a link - usually where the head and neck are concerned.
Past repeated panoramic dental xrays using less sofisticated equipment showed a slight increase in some areas. However, with present equipment the risk is very low and outcomes unknown.
Mamograms are far removed from the intercranial site and therefore the answer is no we should not be worried.

Q6) What are the side effects from meningioma radio therapy treatment and what is the risk time-line for these?

Answer: Risks are dependant upon tumor location and volume of treatment required

Acute side effects: short term side effects - hair loss, redness of the skin, loss of energy, fatique and temporary swelling of the brain.

Any permanent damage is less than 3% dependant on tumor location.

Q7) What is the difference between Radio surgery and Radio Therapy treatments?

Answer: Radio surgery - delivery of larger dose of radio therapy in a single session.
Radio Therapy - small amount delivered once a day over a longer period of time.
Difference = Dose delivery and time administered.

Q8) What is the effect on reproduction oportunities for women. Does being pregnant greatly increase the risk of recurrence due to hormone changes?

Answer: Non conclusive - insufficient data available. More research required!

Q9) My daughter and I have both had meningiomas - are they hereditary and should we worry about other family members?

Answer: 1st degree relatives(i.e. Mother - son/daughter or siblings) - A Medical Geneticist referal would be recommended to check for NF2 gene deletion.

Q10) With a craniotomy is scalp pain and numbness common and if so when will it subside?

Answer: Pain and numbness is location dependant - SENSORY nerves are cut through DURING SURGERY but will regenerate. Patients will notice sharp shooting pains on head movement and chewing initially and a duration of 3-6 months is typical.

NB. As a personal note to Question 11, my meningioma was surgically removed from the top of my head and my experiences were itching (due I thought to the healing process) but I still have severe itching periodically. The strangest sensation I experienced was a slight upward movement of the skull plate when sneezing. This has thankfully stopped but there were times when I was sure I was going to sneeze the top of my head off and actually used to place my hand on top of my head if I knew a sneeze was immminent :D

Hope this was a useful exerices for some of you.

Meningiomas More Common In Women!

Meningiomas account for approximately 44% of all intracranial tumors in females and 21% in males. 74% of all diagnosed meningiomas occur in women. They are the only variety of central nervous system tumor diagnosed more often in women than in men and can oocur at any age but seem to be more prevalent in women over 40.

So, the obvious question to the above facts would be why more in women than men? We know we are diffeerent so surely there has to be an outstanding reason?

The only known risk factor for meningiomas is previous exposure to ionizing radiation of the head, such as being exposed to the radiation while being treated for a previous brain tumor. It has also been discovered that there is a correlation between the disease Neurofibromatosis and meningiomas. I was also advised that it could possibly be a chromosomal abnormality but due to so many not being diagnosed and the lack of funding for research in this area the reasons are largely unknown.

What we are told is that there is certain evidence that elevated levels of female hormones may promote growth or regrowth of meningiomas and these facts could account for the percentage rates above.

It could be that whilst we thought we were taking a proactive stance in looking after our bodies ladies, in a controlled fashion, the benefits of such hormonal medication as birth control, infertility treatments, hormone replacement therepy may be outweighed by the risks for a percentage of women and these medications should certainly be discussed fully and carefully for any women who have previously been treated for a meningioma.