Cystic Fibrohystic Tumors in the Lung

miriamledford Member Posts: 2

My husband at was diagnosed in March 0f 2012 with Cystic Fibrohystic Tumors of the Lung. He has hundred's of cyst's from tiny to the size of my fist throughout his lungs. Our Duke says it is very rare and the cysts are created by sarcoma cancer in his lungs that has metastasized. They say that since it is in his lungs it is in his blood and more than likely other places. There's just not alot of info out there. Duke has a Sarcoma Clinic and they have been wonderful. John's Hopkins in Washington confirmed his diagnosis when our local hospital couldn't. CT scans show bunches of air-filled cysts. He went through 6 months of Chemo with little to no change.

My questions are many but I'll limit to 2: Is there anyone else that has or is experiencing this. What is the survival rate?