From: "Dr. D. Kossove" <doctordee@telkomsa.net>
To: <squiredave@worldnet.att.net>; "LMS List" <L-M-SARCOMA@LISTSERV.ACOR.ORG>
Subject: deep vs. superficial , and definitions of skin LMS
Date: Friday, October 31, 2003 1:12 PM

Hi, David, someone posted your letter to me, as you seemed to have
questions for me, and missent the email.  The best place to ask me
questions is on the ACOR L-M-Sarcoma Mailing List.

The mail links on the websites
www.leiomyosarcoma.info
www.leiomyosarcoma.org.uk
www.leiomyosarcoma.org
[these are mirror sites.]
will also deliver questions to me, eventually. After a few days to a
month.  Depending on when we check it.

~~~~~~~~~~`

The distinction between Deep and Superficial occurs for all tumors at
all sites.  Those that you can feel or notice quickly when they grow
are superficial.  They are picked up yards earlier because the
patients notice them themselves.  "Hey, doc, what's this bump?" Means
that the tumor is superficial.

The deep ones are hidden inside and not felt easily from the outside.
It can easily take a year for a retroperitoneal LMS to be diagnosed,
as the initial pain is first thought to be one thing, then another...
Often deep tumors do NOT give symptoms until they are very large.  So
Deep Tumors are generally found when they are BIG

That is why the prognoses differ for deep vs. superficial.  It isn't
so much the PLACE as the NOTICEABILITY of the tumor.  Smaller tumors
noticed earlier have better prognoses.

~~~~~~~

For Cutaneous vs. Subcutaneous LMS, go to the website and look up that
section of Survival statistics.  There is a good selection of Medical
Journal Abstracts there.  [In the revised edition, this page will be
revamped and will be called Primary Site Statistics.]

They are both "skin" tumors, really.
The differentiation is made by a pathologist in a laboratory.
You ask the pathologist if the tumor went beyond a certain margin [the
basement membrane, I think]
If it did, it is subcutaneous.
If it didn't it is cutaneous.
You want a VERY GOOD pathologist to take a look at this, one who is
well versed in sarcomas, and who will carefully look at many slides to
make sure that the tumor doesn't go beyond the border.

Sharon Weiss of Emory wrote The Book.
The Dana Farber Pathologist, Fletcher is also first rate.
Other excellent sarcoma pathologists do exist.
For peace of mind, it might be worthwhile to get a second pathology
opinion, if you haven't already, and discuss the diagnosis with both
the pathologist and your sarcoma oncologist.

I suspect that cutaneous LMS tumors probably come from the goose bump
muscles in the skin.  I think that the subcutaneous LMS tumors
probably come from the muscles lining blood vessels present deeper in
the skin.  I think that is why the two tumors behave so differently.
Many of the other sites are also vascular in origin, and the
subcutaneous LMS behaves like them.

It sounds like your tumor was neither cutaneous nor subcutaneous, but
well UNDER the skin, possibly growing from a blood vessel in the
muscle there, and superficial, because you could feel it.  Your
primary site would then be called "extremity"  or "leg" and would be
considered superficial rather than deep.  You must discuss this with
your doctor, actually.

And thanking you for the suggestions which could not have come at a
better time.
I will try to make sure that these distinctions are more clear in the
next edition of the website, as I am re-writing, editing, and
formatting the site as a major project right now.

De-differentiation was spelled that way on purpose in the definitions
page, as it is a long word, and I wanted to introduce it more clearly
to the medically untrained.  Someone once said that a medical
education was at least 100,000 new words.  Sounds like you are on your
way!

Many thanks on my and the website committee's behalf for your kind
words.  Especially the main proofreader, Alison, who has done a
sterling job, as you have noticed.
And we are grateful for the suggestions.

warmly,
doreen
[doctordee]
[aka Madame Brimstone]
Together we are more, and more effective, than we are separately.

All correspondence is my personal opinion.  I am not an oncologist.  I
am not practicing medicine online.  Provision of information is for
investigation and discussion with your doctors.
 