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suz222's Message Board Messages

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Hi Betsy and Hi Oliver:

I hope I'm able to offer you some real and dependable facts that you can be positive about.

First - a Grade II Diffuse Astrocytoma is not common. Usually the first presentation of brain cancer is severe and diagnosis is often a gliobastoma a.k.a. a GBM.  Those are ugly, evil tumours with poor prognosis.  You don't have that. Be thankful - very very thankful.  A Grade II Astrocytoma often progresses to GBM but catching it early is gives you the chance to be proactive.  It also progresses very very slowly in most cases and sometimes it doesn't progress at all.

Next - statistics for survival rate at 5 years are really misleading.  This is an average of the people involved in the study.  It's not a rule and a lot depends on the number of people in the study.  It's true that every tumour is different but death in 5 years takes into account the people who are hit by cars or a million different reasons and the people who are still healthy and active well beyond 5 years.  Is a mean average only.  Also, the statistics are changing continually.  A current study found that 100% of young people who had even a partial ressection were still alive after 5 years and 97% were alive after 10 years.

Bottom line?  Brain cancer sucks but you are not alone.  Find doctors and medical professionals that you trust.  Follow their advice.  Be proactive and be vigilant.  Take care of your health by eating well, exercising and perhaps a professional therapist to help you with coping strategies.  Nobody knows what tomorrow will bring but you should focus on beating the statistics.  No reason you won't.

At the beginning of my son's journey with brain cancer - 7 years ago - a doctor told us "there's so little we know about this and so much we don't know.  Things are changing all the time."  That is so true.  I've seen huge advances in the last 7 years.  Here's hoping for a cure.  It's possible.

Wishing you all the very best.  Please feel free to reach out to me for more info if you'd like.

Susannah 

My son was in a trial at UPMC.  Specifically Hillman Center in Pittsburgh.  To the best of my knowledge, the study lost its federal funding but I'm not sure they actually stopped taking patients because they had a big backlog of vaccine.  Anyway, it's targeted at stage II.  You can private reply me for more info about our experiences.  Short story, we LOVED the UPMC team.

With you!  New survival records 'R Us.

That sounds small to me.  Some of seen on MRIs - and yes, I've learned how to read brain scans - are much more intrusive.  My call?  I think you're going to be one of the lucky ones and have many many years ahead of you!

Small.  His tumour was about 2.5 centimetres and left frontal lobe.

Dr. Berger was our doctor!!!!  He is the best best best best!! After much research, we chose him and will not regret that choice.  We actually left Canada and totally free health care to be treated at UCSF.  He AND his team are unbelievable.

He was 19 when he was incidently diagnosed after a minor head bump while he was a swimming instructor at summer camp.  He was in the middle of nowhere but a young ER doctor at a regional hospital saw something she didn't like on his CT scan.  She was sensitized because her young daughter has a brain tumour.  She emailed his report to Princess Margaret, a leading Canadian cancer centre.  They recommended an MRI and hence caught his LGG.  And no, no recurrence.  Thank God!!!!

He's super - thanks so much for asking!  No deficits after surgery almost 6 years ago.  No progression as of his last MRI in July.  If he can keep this up for another 60 or 70 years, I'm good.

We laughingly have a deal.  His job is to not have a recurrence.  My job is to worry.  So far, we're both holding up our ends of the bargain!

RE: malignant grade 2 astrocytoma

by suz222 - September 13, 2018

I just want to share that my son was incidentally diagnosed with a Grade 2 astrocytoma at 19 after a minor head bump at summer camp where he was a swimming instructor.  He had surgery and a subtotal ressection.  The tumour was very small to begin with, so the tumour residue is subsequently small.  Seems so much like your daughter with his positive attitude.  He's such a hero - although completely aware of the situation, he appears to feel this is behind him.  I pray he's right.  Wishing your daughter all the best.

My son was incidentally diagnosed in the summer of 2012 and had a sub-total resection in December, 2012.  We were advised to do watch-and-wait but disagreed and chose the surgical route.  Really glad we did as surgery has since become the gold standard treatment where possible.

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