Brain Tumour Survivor

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 Post subject: Looking for some advice
PostPosted: Tue Jun 05, 2012 11:03 am 
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Hi everyone,

I'm really grateful to have found this, most of the forums I have seen have very few Australian members.

Does anyone have any experience with doctors in WA or any recommendations?


Last edited by maddy on Sat Aug 18, 2012 8:23 pm, edited 1 time in total.

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PostPosted: Wed Jun 06, 2012 9:12 am 
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Welcome to the site!

Unfortunately, noone tells you there are two types of neurosurgeon - spine and brain - most are spine. Its only areas with large populations that have brain surgeons.

Mine was a spine surgeon. They can do brain but unless they do > 50 a year of them, it is debatable whether they have the experience. If I need another operation I'll travel.

Mine also crosses the midline, which adds another level of complexity.

Operating as soon as possible was necessary. Radiation and chemo can be delayed. I had to pay for chemo myself and it didn't lead to any shrinkage.

There are more resources available then when I first started treatment 5 years ago. There is the BTAA, www.btaa.org.au, which has a free info pack. There are cancer care coordinators. Various organisations provide assistance.

In terms of prognosis there is the karnofsky score as an indicator. His age and the grade are good prognostically. Hopefully he has the 1p 19q genetic deletion - its significant.

My wife was pregnant when I got diagnosed, so the only effect there was we decided not to have any more. Unfortunately, there are no right answers. Reflection, meditating, massage and counselling may help.

Its a terribly cruel disease, but there is hope. A significant proportion of oligos survive beyond 10 years. My attitude is that there is more nuture than medicine allows. Certainly in cancer diet and exercise are recognised in recovery. I believe that change is important and acceptance only of what you can change is vital.

Beyond the median survival the tail wags! Plan to be that tail :).


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PostPosted: Wed Jun 06, 2012 12:59 pm 
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thanks :)

Is there any way that you can tell whether a surgeon is a spine or brain neurosurgeon? Also how do you find out your karnofsky score?


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PostPosted: Wed Jun 06, 2012 8:08 pm 
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The way I discovered which type Dr. Neville Knuckey was reviews like this site - http://www.doctoralia.com.au/healthpro/ ... y-11585932 and http://www.nrp.org.au/team/nknuckey.html

I have heard of Professor Lind - http://www.neurofinity.org/index.php?op ... c-profiles - unfortunately there doesn't much choice in Perth as Sydney or Melbourne.

Here is a brief synopsis of the karnofsky score - http://www.virtualtrials.com/karnofsky.cfm. There is more specific information in my previous posts :).


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PostPosted: Mon Aug 27, 2012 3:21 am 
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We've decided to go the Charlie Teo route.

3 month post MRI showed no growth but interestingly the neurosurgeon has now decided that rather than removing "nearly all" of the tumour, actually only 50% was removed. We also saw another neurosurgeon for a second opinion. The second opinion was that he would have called it a gross total resection and wouldn't take any more out now because the risk far outweighed the benefit.

So two neurosurgeons: one says there is 50% of the apple sized tumour remaining and the other says there is only minimal traces both looking at the same set of MRI's. We are beginning to have serious trust issues.

We sent everything to Charlie Teo and got a call saying come to Sydney asap he really wants to operate. I have pretty big reservations about putting a 23 yr old through another surgery (that is if we can even afford the surgery, the half hour appointment to see Charlie is $700 alone). I read a lot of journal articles in the medical library that suggest surgery isn't necessarily going to increase life span anyway unless you get it all. Also, it does concern me that no one else is willing to operate but Charlie is, whilst also understanding he seems to be incredibly talented at his job.

Is it worth the risk? Death, severe brain damage, stroke are pretty heavy risks for someone who hasn't had a seizure in the 4 months since surgery, is getting his drivers licence back in two weeks, and has no physical impairment and only minor cognitive impairment with some executive functions.

I feel as though we are lacking the wisdom that comes with age to make these decisions. I'm 22...

Also I wondered if anyone has any views on dietary advice. My partner has been continuously advised that for a grade 2 oligoastro radiation and chemo are not a good choice right now and that there is no where outside australia that can offer us anything better. His FISH test came back negative for the 1p19q deletion, which was pretty disappointing as the oncologist said that there was a 95% chance he would have the deletion.

So he is pretty keen on doing something proactive. At the moment he takes lyprosine, proline, curcumin and green tea extract as supplements. He also has no red meat (fish/chicken once or twice a week), almost no sugar, no dairy, whole grains only and an enormous amount of vegetables and fruit and has regular blood tests to make sure he isn't deficient in iron etc (he is incredibly focused and dedicated to the diet, I don't know how he does it). If anyone has any thoughts on this we would be keen for any opinion as all of our doctors have laughed at the suggestion that we could do anything that would change the outcome of the growth of this tumour. They may be correct, and I would never replace evidence based scientific medical treatment for "alternative treatment", but right now they aren't offering any treatment so what is there to lose?


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PostPosted: Mon Aug 27, 2012 8:26 am 
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I got a second opinion after my first surgery, that only resected 50%.

In my case, we decided the risks were too great. I already had serious deficits after the first surgery, so it was a relatively straight forward decision to make.

If you don't have private health insurance, I believe its going to cost you around $60,000. There is another option, I believe, where Charlie watches and only steps in if necessary.

It sounds like you have a lot of information. Another factor which the doctors don't consider is hope. Making choices and regaining control is part of that.

After my initial treatment, I looked at what survivors had common. There were things like diet and exercise that seemed to make a difference. Improving the quality of life does seem to affect the quantity - just like it does for everybody else.

All plumbers and neurosurgeons aren't created equal. As a health consumer you need to choose.

Good on him for making those changes. Its those who don't change, I believe, who lose hope and control. Plan to be in that 5% who survive long term!


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PostPosted: Mon Aug 27, 2012 1:43 pm 
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We have private health cover so I'll report back on whether they will be prepared to cover the surgery or not.

I think the decision with surgery will come down to how much he is willing to take out. If it's nearly all of it (because it can never be all when you're discussing the brain) that's going to be pretty persuasive. But if it's just a bit more then it's difficult to see how that would outweigh the risks.

Thanks again for your advice


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PostPosted: Thu Sep 06, 2012 5:32 am 
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Extent of resection is a major consideration whether surgery should be considered.

Don't forget to get a second opinion :). Hope the insurance news was favourable.


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PostPosted: Thu Sep 06, 2012 8:00 pm 
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Sorry dear No experience Yet :)


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PostPosted: Sun Sep 09, 2012 8:39 am 
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Hope things are going well :).

Try to be open to any positives to come out of this. Don't buy into the hopelessness of others or those who drain your energy!


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PostPosted: Thu Oct 25, 2012 4:19 pm 
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pretty pleased to be able to say that Teo took it all out!!

No paralysis, no left side weakness, no major side effects, less than 24 hours in hospital with a tiny incision compared to the last one.

All the previous doctors strongly advised against this route, or denied it was possible to achieve this result. I guess luck was on our side.

Charlie Teo is amazing.


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PostPosted: Fri Oct 26, 2012 4:38 am 
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Great news!

We love to hear those success stories. That's the value of second opinions - you make your own luck :).


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PostPosted: Wed Oct 31, 2012 3:14 am 
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Thanks Kenobewan :)

It's pretty nice of you to help out with everyone's questions and be supportive when you've got your own things going on.


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PostPosted: Wed Oct 31, 2012 3:37 am 
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I'll also add if anyone is interested, private health cover did cover the hospital stay (which was only one night) but nothing else was covered. Medicare covered about $150, at least that's something :p The cost of the surgery was also a lot less than other figures I've seen on here (still very expensive though)


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PostPosted: Sat Jun 15, 2013 5:11 pm 
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Hi kenobewan,
Great links and thanks for sharing with others also. Keep sharing useful links to make life healthy and easy for others. Thanks in advance for more inputs.


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