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AmyLynn493's Message Board Messages

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RE: oligodendroglioma grade 2

by AmyLynn493 - August 01 at 10:09 PM

On Jun 04, 2012 2:05 PM kwyattm wrote:

Hi Cheryl!

I'm sorry to hear about your diagnosis, but know that you're not alone!  I was just diagnosed with an oligodendroglioma myself at the end of May.  But you have two things going for you that I don't: 1) Your surgery was 100% resection (mine was 90%, which is still pretty good) and mine was grade 3.  Regardless, I see a lot of the same scary survival statistics that you do, but you have to realize that there are a lot of factors in those numbers that don't apply to you.  I'm also a cancer researcher (use quite a bit of statistics) so I know what I'm talking about! :)

A lot of people that get these diagnoses are already pretty sick when they get them and don't last very long because of what are known as "co-morbidities."  Imagine someone coming in with seizures that also has diabetes and heart disease, gets diagnosed with an oligodendroglioma and lasts 6 months: that's not necessarily because of the tumor, and those early death statistics also include people that get hit by a bus!

I was first diagnosed with GBM grade 4, which is a bad momma!  That has median survival time of 3.5 years after diagnosis.  Realize what median means as well: 50% of the people die before 3.5 years, and 50% die "after 3.5 years."  That could mean 3 years, 6 months and 1 day all the way up to watching your kids retire!  You really have no idea.  And it's not a coin toss who gets the longer life: it's a function of how well you take care of yourself, the type of treatment you get, how closely you monitor your tumor, etc..  Please also realize that most of these studies are "old."  I read one study on oligodendroglioma published in 1997.  It described a minority of patients that survived 20 years.  Well those patients had been diagnosed in 1977!!!!  Jimmy Carter was president!!!  That's a far cry from 2012, where by the end of the year a human DNA sequence can be attained for <$1000 in 15 minutes.  Compare that to 1977 when the first DNA sequence EVER was generated.  Things change REALLY fast and new therapies come out all the time.  So take those statistics with a grain of salt.  Like I said, you've got a lot of things going for you that I don't, and I've told my wife I fully intend to be at our 50 year anniversary (which will be in 48 years).  We also have a 1 year old. :) When I asked my physician about my prognosis, he said, "Well, it's better to NOT have a brain tumor. . . ).But I and my oncology team all believe there is a lot of hope for this.  I'll start my Temodar soon, and it sounds like these things are really sensitive to this treatment (especially if you have a certain deletion/translocation - I don't know if your physician has spoken to you about this yet).

Bottom line, you've got a lot of good things going for you.  Those numbers are scary, but they really just don't tell the whole story.  Keep your head up and just keep going.  I think if you have faith, you'll be able to watch everyone grow up!

Good luck!!

Wyatt

Hi Wyatt! I’m new to cancer compass. I was diagnosed with oligodendroglioma grade 2 with codeletions and I start chemo in a few days. I’m really curious to hear how you’re doing. I appreciate any advice you may have. Thanks, Amy
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About AmyLynn493

Brain Cancer
Cancer Nutrition, Chemotherapy, Diet, Emotional Support, Insurance, Radiation, Side Effects

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