Malignant fibrous tumors on lung pleura

I have had 3 recurrences of malignant solitary fibrous tumors on the pleura of my lung.  I am told that this is rare and that no other treatment is called for except surgery.  I have Ct scans every 3-6 months to check for a recurrence.  I am wanting to get in touch with anyone who may also have this condition to compare notes on what we have learned about this condition.