Brain Tumour Survivor

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 Post subject: brain tumor
PostPosted: Mon Sep 03, 2012 1:04 am 
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Joined: Sun Sep 02, 2012 2:25 am
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hi everyone, I am a 50 yo male who was diagnosed 2 weeks ago via cat, mri and pet imaging as having an aggressive malignant brain tumor frontal lobe crossing the mid line, so that removal was unlikely (told it would give me a lobotomy) had a biopsy performed Tuesday week and a half ago, pathology did not indicate a tumor. Dr yonker said it was probably there but my surgeon didnt go deep enough, go back for angiogram cat scan 2moro and further biopsy wenesday as well. have huge cut on forehead and brain fluid leaking into it which looks scary and feels horrible. steroids have solved massive headaches 4 time being but i can tell from medical team that i am in serious trouble. also very impatient and tired. girlfreind doesnt beleive I am sick,what should i do, just beleive rpa neuro team or delay second op and do more diagnostic work. 1st op left me feeling numb in top of head and a horrible pulsating sound(very holow that comes and goes, like a submarine blip!) Something tellls me that this is gonna be a painful exit.


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 Post subject: Re: brain tumor
PostPosted: Mon Sep 03, 2012 8:26 am 
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Joined: Mon Mar 10, 2008 4:03 pm
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Location: Australia
Sorry to hear of your diagnosis.

I believe the first thing you should do is contact a brain tumour support group for information and support.

If I were you I would seek a second opinion. It doesn't sound like your current team is too good at communication.

I have a tumour that crosses the midline. What this means is not 100% is resectable, but I'm still here five years down the track.

Currently it seems you have many fears based on lack of information. Fatigue and other symtoms can be managed.

Plan to be in that 5% - the tail gets longer and your chances actually improve over time.

All the best!


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 Post subject: Re: brain tumor
PostPosted: Thu Sep 06, 2012 5:27 am 
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Location: Australia
Any news?

The fact that you are posting means that you haven't given up hope :).


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 Post subject: Re: brain tumor
PostPosted: Sat Sep 08, 2012 7:43 am 
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Hope is vital.

I believe that energy may be more important and springs enternal if you just grasp onto it :).


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 Post subject: Re: brain tumor
PostPosted: Wed Sep 12, 2012 5:29 am 
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Avoiding faitgue is crucial!

Less thinking is actually more productive to healing.


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 Post subject: Re: brain tumor
PostPosted: Thu Sep 13, 2012 5:18 am 
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Knowing the right treatment options for you is also important :).


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 Post subject: Re: brain tumor
PostPosted: Sat Sep 22, 2012 3:42 pm 
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Hi all, thanks for your feedback. my diagnosis has changed after further prognostic tests, they are very puzzled by data imaging and grey matter presentation but are fairly certain it is lymphoma or vascullitis, either systemic or primary. The team, to me, appears very switched on. My main treating Doctor is now Dr. Parratt who impresses me greatly, as does Dr. Steven Winter who is also heavily involved. To be honest for a public patient i am getting a substantial level of care and was interviewed by an expert panel of 30 odd specialists at the hospital (RPA) yesterday, who all seemed puzzled by my case. I do a catheter angiogram Monday (hopefully) to clarify Vascullistis nature of growth,and further blood pathology tests looking for lymphoma markers, and commence high steroid doses Tuesday to slow down growth in the brain, it is showing signs of aggressive growth! Must comment on all medical team, very understanding and professional in a difficult environment( I can be difficult at times).
As an aside, can you believe that the criminal cases requiring hospitalization attend the public awards under armed guard, I have a guy with 2 guards in our ward now who dominates the place and forces 3 older men who are very sick to endure his prison like mentality( plus guards talking and texting day and night, who can blame them) The guy is shackled to a bed and puts every one ill at ease, doesn't make any sense to me, why not have him in a private room so the others can be more comfortable, with the guards and nurses, visitors,doctors etc. and 4 beds there's some times 10 to 20 people in the ward, quite overcrowded really. ( and very noisy for neurology ward). God the valproate and dexomethasone knocks me around! Can hardly walk at times.
Hoping for good outcome now, see how steroids go, they say chemo in 4 weeks probably, what can I expect there in terms of nausea , discomfort and distress.


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