Dec 23, 2012 - 2:49 pm
Hi, I was just diagnosed with MPNST in Nov 2012. This is a sarcoma. Mine is in the center of my sciatic nerve in the upper part of my right leg behind the femor. I just started radiation treatment for 5 days a week for 5 weeks. My choises were amutate or take out the sciatic nerve. I decided to go with taking out the sciatic nerve. Hope this was the right decision. The doctors told me that amputation would be 100% cancer free in leg(of cource) or 90% cancer free if they take only sciatic nerve out. Both of these option still caried a 50/50 chance that they would reappear. They said I would need to have a CT, MRI, and Pet scan every 3 months for at least 2 years. Been trying to find as much info as possiable but not having much luck. I'm told is very rare and probabley why I can't find much info. If there is anyone out there that could share or direct me to some info that would be much appreicated, internet or good books. I'm worried that during surgry they will find more cancer and would need to amputate my right leg. The size of my tumor is just under 5cm so would not need cemo I was told at this time only radition. After surgry I was told I would need to wear a brace from my knee down to my foot due to drop foot from operation. Could anyone who have had this let me know how things went for them. I'm 56 years old man and feel I have a lot of life left. I don't even feel like I have cancer. Other than problerms with my right leg from this I feel fine. I have only knowen for a month so this is all new to me. My operation is taking place at Mayo in Rochester MN some time in late February or early March of 2013. I feel good about my doctor doing the surgary. Mayo is a great place to be from my understanding with a problems like this. I just wish I knew more about this cancer. Been looking as much on the internet on this and alot of what I see in some of these blogs is it ends up with amputation at some point and time. As much as I hate to think about it I'm also interested in average life span after being diagnosed. My doctors have said nothing about any stages or any length of life span. Its scary to think about it but somewhat have this need to know what an averege life span is once you know. Hope you can read this and I get some replys. Been looking for what seems like forever. Thank you for taking the time to read my post. Please tell me where I can find more info. Thank You.