Brain Tumour Survivor

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 Post subject: Please Help in Canada
PostPosted: Thu Jun 28, 2012 8:32 pm 
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Joined: Wed Jun 27, 2012 8:05 pm
Posts: 3
Location: Canada
Hi Everyone:

My son, age 19, was incidentally diagnosed one week ago with a small, 3 cm low grade glioma in the left frontal opercular. It is hypodense, presents as an astrocytoma. He is completely symptom free.

We are currently circumnavigating the classic glioma Catch 22 - surgery or watch-and-wait. Our surgeon is the world pioneer of awake surgery with in suite MRI mapping.

Please - could everyone share their stories. His father and I are dedicated to his progression free survival. I know that cures are very rare. However, I would LOVE to hear success stories.

Our son's name is Drew. Drew is currently at McGill University studying education, a level 11 ski instructor and life guard instructor. He is working this summer at a camp teaching swimming and hopefully enjoying the spectacular Canadian version of the outback. We call it The Shield.

Thanks to all for sharing. As you know, this is a VERY scary journey


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 Post subject:
PostPosted: Fri Jun 29, 2012 7:26 pm 
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Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Welcome to the site!

Drew is lucky as they sounds like they caught it early. Also treatment is improving all the time and it is great to have the a pioneer onboard. Unfortunately, for us we didn't know that there are different neurosurgeons - spine or brain.

There are others on this site who are longer survivors, but I am now five years and going well. Mine is a large diffuse tumour that crosses the midline.

Other more impressive stories may be found at http://www.virtualtrials.com/survive.cfm. If your searching for inspiration, try reading "The Median is Not the Message" by Stephen Jay Gould.

I am hoping others share their stories :).


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 Post subject:
PostPosted: Fri Jun 29, 2012 8:29 pm 
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Joined: Wed Jun 27, 2012 8:05 pm
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Location: Canada
Thank you so much for your kind and speedy response!!

I am extremely interested in comparing standards of care between Australia and Canada. Both are first world economies with universal health care. Also Commonwealth countries with close ties to Britain. For Canada, the ties to France are strong as well. As you probably know, French universal healthcare is the world's most comprehensive.

As you also know, "style" and $ plays a part in medicine. Look at the Americans. Talk about the Marlborough Man.

Interesting stuff. I hope to share what I'm learning. Two instant truths -
skill of the surgeon is paramount. And, although there are not a lot of medical advances in our area - conquering low grade gliomas is not sexy - the statistical database is growing. For example, MRIs, fMRIs and iMRIs have only been around for 10 years!!


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 Post subject:
PostPosted: Fri Jul 06, 2012 5:19 am 
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Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Hope Drew is travelling well.

Thanks for sharing :).


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PostPosted: Tue Sep 18, 2012 3:38 pm 
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Joined: Wed Mar 02, 2011 7:56 pm
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Hi
I have also been incidentally diagnosed with a low grade glioma (4 cm approx) – front left hemisphere. I have had no symptoms and no surgery or other type of medical intervention. I was diagnosed 2 years and 2 months ago at the age of 38 in Sydney Australia where I still live. I have had quarterly scans and nothing has changed since initial diagnosis. I’ve seen 3 surgeons for advice so far. One (Dr. Charlie Teo) wanted to perform a partial resection (full resection is not possible in my case) and the other 2 recommended watch and wait. I see a radiation oncologist every time I get my scan and he always recommends the watch and wait.

The arguments for watch and wait with a low grade non-symptomatic tumour seem to be twofold – 1) risk management i.e. avoid the risk that comes with surgery, 2) what’s the point – this camp believes that resection makes no different to your overall prognosis.

The argument for surgical resection is that the more you remove now, the longer it takes to progress to a higher grade and therefore the improved prognosis. See here for some research in this area led by Dr. Mitchel Berger - http://jco.ascopubs.org/content/26/8/1338.long. Dr. Teo was also a strong proponent of this approach based on his own findings as well as Berger’s data.

Both Dr. Berger and Dr. Teo are well respected expects in their field so in my opinion it’s worth taking the risk of surgery and getting a resection.

There are many approaches people take to defer tumour progression using diet (See book “Anticancer: A New Way of Life”). I’ve also tried a diet called the Calorie Restricted Ketogenic Diet pioneered by Dr. Thomas Seyfried (listen here if interested http://www.thelivinlowcarbshow.com/show ... isode-302/) The diet involved is quite unpleasant but not impossible – I did it for around 2 months. It made no discernable different to my tumour although Dr Seyfried claims to have anecdotal evidence of improvement in patients. He will respond to emails if you contact him.

I’m actually moving to Canada (Ontario) myself in October so I’d be interested to know what the system is like there. In Sydney you do end up a bit out of pocket for scans / surgery but it’s mostly covered by Medicare unless you go with a specialist like Dr. Teo for surgery who can cost somewhere between 10 and 35 thousand…

Hope this info is of some use and that your son is staying positive.


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