Seems that the neck area is most frequent place for primary site of LCS. It also likes to locate itself in  Lymph nodes in the neck area. This is just what I am seeing from the few new cases since starting the site.

There are of course many other locations. 7 yr old Sydney- spine. A gentleman from USA- groin. Daniel- pelvis. Another case- Neck- tonsils and Lungs.

I have just been contacted by a gentleman whose son, 14 has been diagnosed- neck lymh node area. 

CHOP chemo seems to be the main choice , some are also using radiation and  surgury to remove the tumour if possible. 

It would be wonderful for all if you could take a minute to share your tumour locations and treatment protocol with the others on this site and keep us updated if you can with how you are going. This is so rare thats its crucial to share what we can.

Wishing you all well and hoping that you are all doing fine.

Daniel's scans are still showing up clear! The same goes for Russell ( Tenessee) - who just had a clear PET scan! 

Maria