Pleomorphic Liposarcoma

My husband who is now 64 yrs. was first diagnosed with 'pleomorphic liposarcoma' cancer in December 2003. He had it on his upper right back near the arm pit. He first noticed a very small lump on his back in Sept 2003. The VA doctor kept saying it was only a fatty tumor and do not worry about it. Well it kept growing and growing. He went back to the VA doctor and told them he didn't care if it was only a fatty tumor, he wanted it taken off. The first surgery was done Dec 19, 2003 and a biopsy was done. He went back to VA doctor a week later and was told it was Pleomorphic Liposarcoma cancer and that he did not get it all. This was all done at VA in Las Vegas. We decided to come back home to Nebraska where he could possibly get better care and be closer to family. His second surgery was done Febr 28, 2004. The tumor had complete grown back to the size it was before it was removed and even was somewhat larger. The VA referred him out to Nebraska Med Center as it is such a rare cancer. We got lucky with the very good doctors we had. They cut out the tumor and a large area all around the tumor, blasted hole with radiation and then took skin graft from leg to replace area on back. The hole is the size a small dinner plate. Scans were done after that every three months. In Oct 2005 a small nodule was found in his lower right lung. The VA removed it last Febr 20, 2006 and it is the same cancer as was on the back. While doing this, they discovered a small growth in his throat and that was removed March 19, 2006. That was negative for cancer. He developed the hiccups right after his lung surgery in Febr and that lasted over 2 weeks after surgery. I have searched and searched for more information and help as the VA is not the quality of doctor one needs for this type of cancer. They will not refer him out anymore unless he needs radiation. The chemo for this cancer is so deadly and dangerous and there are no guarantees it will help. I guess not enough studies have been done. He was stage three when surgery on back was done in 2005 and now in 2006 with more found in his right lung, they say he is stage four. All the cancer seems to be only on his right side, I don't know if that means anything or not. He now has a lump on his right arm where they had the intervenus needle during lung surgery and also appears to be getting a lump where he had a mole removed on his face recently. Both are on right side as well. He is in very little or no pain right now. We have not given up hope and I continually search for answers on what should be done next. I appeal to any and all for your ideas, thoughts, comments.
Bonniegirl

pleomorphic liposarcoma