Most cancers will go to (or metastasize to) the lymph nodes that drain the site where the original cancer is located first. The cancers can also go through the blood stream to farther locations in the body, but will usually show up in the lymph nodes first. Which is why the lymph nodes are looked at first, if they are negative then there is very little chance the cancer spread anywhere else. That's why I'm not comforatable with doing nothing if there's the slightest sign of it already in the lymph nodes.
I'm being seen at Aurora St. Lukes Medical Center in Milwaukee, WI. But we've been in contact with a few medical professionals across the country. In case you didn't look at my profile, I am an OBGYN dr and my husband is in general Internal Medicine, so we have some resources to tap, and I have trouble not answering medical type questions, although this is certainly not my specialy. And this is such an uncommon cancer that we had not really encountered it before. Although I did have one patient with it who was having trouble getting her doctors to pay attention to her. Now I kind of understand why, and am glad I encouraged her to keep asking and seeing different drs until she felt comfortable with the answers she was getting. I'll keep you all posted with my progress as things play out over the next few weeks. I think I need to heal from my surgery before anything else too invasive should be done, also my oldest daughter is getting married on Jan 17, 2009, so want to put off anything that will interfere with her day. Thanks for all the support.
Lucinda