From: "Dr. D. Kossove" <doctordee@telkomsa.net>
To: "lmS List"
Subject: comparison of National Statistics
Date: Thursday, November 27, 2003 1:37 PM

The comparison of national statistics on any and all diseases is not a competition, but a highlight and an alert.

Knowing what the best outcomes are, looking at the treatment offered there, and THEN seeing what can be done in geographical regions where the outcomes are poor, is a prime way to focus effort and resources to achieve results.

But anyone on this list, who is listening carefully, will know that treatment varies from country to country.

We have heard Canadian after Canadian tell us that surveillance is poor, treatment is poor, knowledge is poor... outside the sarcoma centers.   We know that Princess Margaret seems to have a very good sarcoma department there.  We also know that outside the major sarcoma centers, there is trouble.  And that a lot of the trouble is ignorance and attitude.

We know that similar situations exist in Australia.

Often in these countries, ONE chemotherapy is offered only..  Doxorubicin.  

We know that the NHS tries to make sure that the sarcomas are referred upward to the sarcoma oncologists, and that this makes a difference to those people.  We also know that the NHS is strapped for funds, and that metastasectomies are hard to come by because the surgeons are few and cannot fit everyone in.

We have also seen what Lynette has accomplished for her son.  And what others have accomplished in far flung corners.  

These are real.  When someone writes to us from another country, it is not so easy for some of them to find a sarc onc, or a surgeon who is willing to do metastasectomies and knowledgeable about them.  

Even I got tired of chivvying and telling and pushing and trying to get equivalent treatment in Africa.  

My advice to the people who are in outflung countries is to get to the nearest center with some sarcoma knowledge, and learn as much as you can as well, yourself. 

 It is harder for those people.  Their medical systems also may be more authoritarian and less flexible than that in the US.  They have a tough row to hoe.. and much of it is because of attitude of the doctors.   Pulling hen's teeth is probably easier than changing a doctor's attitude. 

AND lest you think that I am extolling the US,  treatment here can be terrible if you are not referred to sarcoma-knowledgeable people.  The gyn oncs here who say a pelvic exam every three moths and a Chest XRay every six will do you just fine,  OR "we got all the cancer out, don't worry your pretty little head"...  for high grade ULMS...  singlehandledly shorten many lives.  

ULMS people need to empower themselves to get the surveillance and the treatment that they need.  ALL over the world.

love,
doreen
Publicize LMS... sue your doctor.
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. 