Christine dear, I'm so sorry that you have to go thru this crap.
Your life is just beginning.

I completely understand your worry when you read about ES on the
net. It was back in 2000 when I first heard the words and there was
a lot less info then - I think I only found 2 sites and they were
both quite outdated!

But, on a positive side, I had heard the word Sarcoma when I was in
High School - back in the day!! 1969, to be exact!! Our class was
learning about different cancers, and our teacher, a Registered
Nurse, told us if a patient is diagnosed with Sarcoma "they will
die." So imagine my fears with I heard it again in 2000 - and it was
associated with my daughter!!!!!!!

I never told her that story. I never told anyone until after she
died.

The good thing is that, in 30 years time, Sarcomas went from being a
death sentence to a 20% survival rate - I believe that's what ES is
considered.

I remember Stephanie's doctor telling us that ES can 'sheet' along
muscles, making it hard to pick up on a scan.

I do hope you have consulted with a Sarcoma Specialist!! This is THE
most important thing you can do for yourself!!!

Most Oncologists will never even see a Sarcoma during their years of
practice. You want someone who knows as much as possible about the
different kinds, different treatments, what works and what doesn't,
and clinical trials available. Sarcoma Specialists will be at one of
the few Sarcoma Clinics around the US, and world.

I know that Sarcoma Alliance has a good list of specialists and they
will even help financially if you want to get a second opinion.

--- In Epithelioid_Sarcoma@yahoogroups.com, "chiogeek" <chiogeek@...>
wrote:
>
> Hi everyone! I thought since everyone was sharing thier experiences
> with ES, i might was well introduce myself. My name is Christine
and
> I'm a 21 year old college student. In Aug 2007 i was diagnosed with
ES
> in my left thumb. There was a bump that had been there for about a
year
> when I finally got it removed. A few days after my first surgery, I
> recieved a call from the doctor, and he sent me to an oncologist
who
> diaognosed me. I had a full MRI of my arm, a full body bone scan
and a
> scan of my lungs. They were all clear, but the doc had to amputate
my
> left thumb so it wouldn't spread. I ended up with a 1 cm clear
margin,
> and I couldn't be happier! I'm now going through MRIs every 3
months,
> and even though I had that clear margin, I'm still terrified of the
> results. I made the mistake of serching on the Internet for ES, and
i
> scared myself to death looking at all of the research. I know this
> sarcoma can't "jump" over normal tissue, and I also know that if it
> spread somewhere in my body from my thumb, I wouldn't have a clear
> margin. Is there anyone who can give words of encouragement?
Thanks,
> Christine
>