Dec 20, 2009 - 12:01 am
i just discovered on Wednesday that I have telangiectatic osteosarcoma and am still in a bit of shock. I'm 23 years old, have a 2 year old daughter, and am about to start graduate school. I was misdiagnosed for a year.
I have suffered from "benign" bone tumors for about a year now. I began having pain in my left upper tibia in November 2009, my doctor finally sent me for an x-ray and then for a CT, MRI and so on. I was then referred to an orthopedic oncologist. I had my first biopsy and surgery in January 2009 and the pathology report came back as being an aneurysmal bone cyst. I was fine for 7 months. I began having pain and swelling again in July and discovered my lesion had come back and spread into the surrounding muscle. I had it removed August 18, 2009 and had severe drop foot following my surgery. I went through PT for my foot and regained most of the use. Come November, I had pain and swelling again. I was sent for a MRI and lo and behold, it came back again and was in both muscle and bone. I had surgery December 2, 2009. This time my orthopedic oncologist who was also my surgeon sent the entire tumor to the Mayo Clinic in Rochester. They came back with the diagnosis of telangiectatic osteosarcoma. I go in for a PET scan and a CT scan of my lungs on Wednesday.
I'm devastated. How in the world could they miss this twice? What in the world are the chances that it hasn't spread already? My oncologist believes that I may lose my leg since the tumor had already invaded the muscle.
I won't know much until I found out if it has spread. Has anyone else been through anything like this?