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PostPosted: Thu Jul 04, 2013 6:05 pm 
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Hi wondering if anyone else has a brain stem tumour that is benign and has had radiation. Did it work? Due to location (6th/7th cranial nerve) surgery is not an option.

I have a pilocytic astrocytoma WHO grade 1 that is multifocal as I have already had one removed completely from the Vagas nerve (4th cranial nerve I think) Sept 2012.

Both grew very suddenly and doubled in size within a few months. Apparently this is quite rare as an adult (41yo F) to have one of these and on the brain stem and the growth habit was surprising to the Drs also.

I am hoping to get some further first hand information as the dr's are at a loss saying sorry we can't do anything further it's just a wait and see thing sue to placement if it grows a few mm even it will likely kill me. I am as ok with dying as you can be as I faced it the first time as I was near dead before the surgery (I was starving to death literally and had bradycardia being on Vagas nerve made me vomit constantly and couldn't keep food or liquids down for 11 months) the surgery was very risky so I have reconciled that...but what I am having trouble with this time is having no idea of the future at all. Have I got 1 month or 1 year? no-one seems to have a clue about it? I am in Australia.


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PostPosted: Fri Jul 05, 2013 8:49 am 
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Hi

Sorry you are in this situation. As you have learned, benign and brain stem don't go together.

Hope your case has been reviewed in Sydney or Melbourne, where they get the numbers. Is it worth/possible getting a 2nd opinion from a paediatrician who has seen enoungh of these cases?

BTAA have freecall number and information pack available from their website - http://btaa.org.au/.

I try to live each day in the present, sometimes easier said than done.

I wish all the best, please keep us updated.

Cheers Ken


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PostPosted: Wed Jul 31, 2013 9:32 pm 
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Location: Syd, AUS
LMC171 wrote:
Hi wondering if anyone else has a brain stem tumour that is benign and has had radiation. Did it work? Due to location (6th/7th cranial nerve) surgery is not an option.

I have a pilocytic astrocytoma WHO grade 1 that is multifocal as I have already had one removed completely from the Vagas nerve (4th cranial nerve I think) Sept 2012.

Both grew very suddenly and doubled in size within a few months. Apparently this is quite rare as an adult (41yo F) to have one of these and on the brain stem and the growth habit was surprising to the Drs also.

I am hoping to get some further first hand information as the dr's are at a loss saying sorry we can't do anything further it's just a wait and see thing sue to placement if it grows a few mm even it will likely kill me. I am as ok with dying as you can be as I faced it the first time as I was near dead before the surgery (I was starving to death literally and had bradycardia being on Vagas nerve made me vomit constantly and couldn't keep food or liquids down for 11 months) the surgery was very risky so I have reconciled that...but what I am having trouble with this time is having no idea of the future at all. Have I got 1 month or 1 year? no-one seems to have a clue about it? I am in Australia.


I am so sorry to hear about your situation.

My partner was given a year prognosis a few months back if we hadn't gone through with the surgery. He said that he would eventually become quadriplegic and the brain stem tumor would stop his breathing and heart beat. His tumor also grew rapidly within a short period of time and due to the area, millimetre growths are huge.

We went to Charlie teo in sydney as the LAST last resort and he had said if we came to him when he was initially diagnosed, the outcome would be significantly better (simple resection without any complications). I suggest you see him if you want to see a different opinion with all options laid on the table. John Hopkins in the USA is also an option but would be veryyyy pricey (>$100G at least).

I hope that helps.

x


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PostPosted: Tue Dec 10, 2013 3:45 pm 
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Hi thanks for your replies. I got a second opinion from Professor Smee ( who works with Teo) and he supported my existing medical teams view on treatment and surgery( not an option due to location). I am currently seeing Neuro's and Surgeons and radiation oncology at RPA ( now Lifehouse what an awesome building and set up!!)

The activity at the surgery site has decreased in size so hopefully was radiation swelling and the tumour they were treating appears to not have grown :) but I have 2 new spots. I am off to see my neuro tomorrow to get more of an idea where we are at currently.

I am not on any medication at present and feel ok. The double vision and balance issues due to this are hardest to deal with. The post surgical nerve pain etc is annoying and painful but compared to the vision issues not a biggy. Swallowing and choking on air/saliva/water/food is concerning but has not increased nor decreased.


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PostPosted: Thu Dec 12, 2013 7:04 am 
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Congratulations on the courage you are displaying!

Good on you for getting second opinions - at least they confirmed your first advice.


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PostPosted: Tue Jun 24, 2014 4:42 am 
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I've never ever face this kind of problem in my entire life but I've heard about it so many times, And whenever I see I just got one think as solution, Yeah! It's surgery. But I've heard very first time what you are talking about (pilocytic astrocytoma). It's good to know.


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PostPosted: Sun Jun 29, 2014 3:10 pm 
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If you see a surgeon, they'll recommend surgery. The same for the other specialists, who tend to recommend their own specialty.

It was refreshing to hear from my radio-oncologist that he wouldn't have recommended radiotherapy at the time of my original treatment.

Its always refreshing when a care coordinator is involved to set up a team approach.


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