Sarcoma Stage 2

Does anyone else have the situation of already having surgery for the tumor and that surgeon didn't get it all and now I am faced with (6weeks later) with probably more surgery because they did not get it all. 

The thing is, is that the new onocologist is waiting for the op report because the old doc did not forward the report.  So she (new one) said that if the old surgeon has that she has clear margins on her report than she would not recommend more surgery. But, the pathology slides show no clear margins and the cancer goes right to the edge of all of the slides. 

Does anyone have any input at all?  We see the new surgeon on Friday to see what she says, are we being to pushy to request that we should go by the path slides over what the first doc had dictated

I am a sarcoma patient myself. I have uterine leiyomosarcoma.

Are you being treated at a sarcoma center? If not, you may want to consider changing hospitals. There are doctors that specialize in sarcoma, and from what I have learned it is important to be treated in a place that that sees enough sarcoma patients to be considered a sarcoma center. It is a relatively rare disease, with its own quirks, and therefore helpful to go where they see more cases of them, and have doctors who specialize in sarcomas.

 What hospital are you dealing with? Would you like some help locating sarcoma centers?

Many patients go to doctors at sarcoma centers to deal with the treatment decisions. Then the sarcoma doctor coordinates with a local hospital, and then the patient actually receives treatment locally.

On 3/6/2008 lovedogs wrote:

I am a sarcoma patient myself. I have uterine leiyomosarcoma.

Are you being treated at a sarcoma center? If not, you may want to consider changing hospitals. There are doctors that specialize in sarcoma, and from what I have learned it is important to be treated in a place that that sees enough sarcoma patients to be considered a sarcoma center. It is a relatively rare disease, with its own quirks, and therefore helpful to go where they see more cases of them, and have doctors who specialize in sarcomas.

 What hospital are you dealing with? Would you like some help locating sarcoma centers?

Many patients go to doctors at sarcoma centers to deal with the treatment decisions. Then the sarcoma doctor coordinates with a local hospital, and then the patient actually receives treatment locally.

I had the cancer in a retroperitoneal mass, (leiomyosarcoma) I never had it in the uterus.  Intially they thought it was ovarian cancer, and it was only when the surgeon went in did she see that it was an enity by itself.

And the run around to get someone to give a straight forward answer.  They were bascially as the old doc said "putting me on the fence".  That's when we went to find a doc that had experience with sarcomas

We still don't know what the protocol is if we have problems, like signs to look for.

I had low grade myxoid LMS too. It changed to ESS in 2000. It spread to my lungs and back to the retroperitoneal area. Do you know that www.acor.org has an online support group for LMS? Join and learn the treatments for LMS. I know it is important to go to a sarcoma center.

Keep hope alive. You need not be alone in your leiomyosarcoma journey.

The list has many people on it from all over the world. They will give you good advice. I urge you to join it.

If you want to know my story, it is posted online on the www.LMSDR.com

story pages.

Rosalie