Confused 32yr old with big brain tumor

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Jogi
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Joined: Sat Apr 21, 2012 5:22 pm

Confused 32yr old with big brain tumor

Post by Jogi » Sat Apr 21, 2012 7:52 pm

My beautiful 32 year old partner was diagnosed with a grade 3 Astrocytoma presenting with oligodendroglioma. He had headaches for a few weeks before having a seizure. A CT scan found the growth on his left lobe. We were transfered to a bigger hospital with a neurology department. He was extremely agitated - he settled the next morning and they tried to MRI him, but he was still too agitated to lie still. He then proceeded to get very sleepy which I found strange and asked for the doctor- finally after persistently bugging the nurse she finally called someone and then he proceed to 'cone' - some sort of brain snap and he was whisked off to ICU and put on life support. It was a incredibly stressful and devastating time. But he was taken off only 24 hours later and on more than one occasion and by several doctors I have been told how much of a 'miracle' it was. He was operated on a few days later and then we were told of the diagnosis. Grade 3 tumor 3 cm big. We were due to start radiation 3 weeks later, but decided to get a second opinion just to appease our worried minds. Little did we know that we had dodged the biggest bullet!!
We saw Charlie Teo in Sydney and he pointed out the 'grape' size hole where the initial ( and ONLY tumor we thought) had been removed and then he pointed out the orange sized tumor that still remained!!!!
You can only imagine our response- stunned into disbelief!
We got in contact with the original hospital and they quickly arranged a meeting to go through scans and results. So by now we were totally confused - who to believe? We kept thinking -Why would Teo say something that wasn't true? Maybe they sent the wrong person's scans was another thought. So we arranged and paid for another MRI and guess what - there is a 10cm by 5cm large diffuse low grade tumor still present. Hard to miss something like that one would think!!!
So here we are - roller coaster ride - trying to decide the best course of action.
To operate (Charlie of course) , then radiation followed by chemo or by recommendation from our medical oncologist straight to radiation and chemo and not take the chance with the operation because the tumor has gene deletion characteristics that make it extremely susceptible to the radiation and chemotherapy - with a 70% chance of going into remission?
My partner is nervous about the operation, he came out of the other one very well and is worried Charlie might take too much and leave him physically or mentally worse off. He has been given a 15% chance of something going wrong rather than the usual 5% due to the tumor size.
We need to make a decision soon but after all the set backs we really want to make the best one.
Anyone with any advice? I have found this forum to be incredibly helpful and the stories so inspiring.

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kenobewan
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Post by kenobewan » Mon Apr 23, 2012 7:49 pm

I feel for you - its not an easy decision for either of you.

Assuming the pathology is right, the higher the grade the more justified the agressive treatment.

He has his age in his favour, but it rare to talk of brain cancer going into remission - sorry to say.

The size suggests it has been around for quite a long time, hence low grade indicated for the second.

If he has few symptoms, given the size and number of tumours he is extremely lucky.

You have possibly as much information as you going to get - now comes courage mixed with hope :). Unfortunately, no one can make that decision for you.

I have promised myself that no matter what happens now, I won't be making decisions based on fear or anger.

All the best with your decision!

romina81
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Joined: Tue Jan 03, 2012 12:26 pm

Post by romina81 » Mon May 07, 2012 3:25 pm

Your partners story sounds very similar to my husbands.

All I can say it to go with your gut instinct. We have always done that with all of Olis 5 surgeries.

All the best with your decision and please let us know how you go.

Romina81

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