Synovial Sarcoma

Hello everyone. Im posting a "cliff notes" version of what I have been through over the last couple of months.
I had a large tumor in my arm above my elbow that was diagnosed with what was thought to be lyposarcoma by a respected physician before I even had the biopsy performed. I then had a surgical biopsy and was told the tumor was benign. When I went to get the stitches removed 10 days later the Dr. then sat down with me to tell me the tumor was malignant. The tumor went through the hands of 4 pathologists and none could agree as to what it was. The Dr. that made the final call stated that what I had was MPNST (malignanat peripheral nerve sheath tumor).    The one thing they can alll agree on is that the tumor is "low grade".
Heres my question: Has anyone gone through something similar and chose not to have the recommended surgery. I will have radiation treatments for 6 weeks and then a 2 week break before surgery. Since the chance of the tumor reoccuring evn with surgery remains Im not sure I want to have the surgery because it will disable my arm and the surgery will expose me to risks of infection that could also hurt me or kill me. Any responses from my cancer friends/warriors would be appreciated.
Adios,
RPonce

[Cherlie]

I agree that you need to have radiation first and then surgery.  But as patients doe we really have a choice?

[GeezLouize75]

To Cherlie: You better believe as patients we have a choice!!  

Rponce, how long will the arm be disabled?  I would Google this and find out what others have done and the outcomes before I made a decison to NOT have the surgery.  Good Luck and God Bless.

[rponce1]

I know for sure we have a choice in the surgeries and/or treatments. The tumor I have presents itself in only 800 people per year in the USA. Having the tumor in the lower extremities, trunk, and upper extremities would seem to make a difference. This is my dilema. I have only been able to find one report in a Medical Journal that shows results for this particular cancer in the arm like mine is. There were only 4 people in this study.
My wife is an RN at a hospital and we have access to all of the journals studied by Doctors at the School of Medicine in our city. Very little has been published on this type of tumors and when I research the references used I am finding old data. Be aware. The treatment and cure rate for many types of cancers increases all the time.
As to the surgery I am facing: I am to have 2 of the 3 triceps removed in my right arm after radiation if it is possible. It might come down to having all of the triceps removed. Disability on this arm may be lifelong. Like all cancer patients I'll do whatever it takes to save the arm.  The tumor is low-grade, superficial, >5 cm, but deadly. Any response is appreciated.
Your fellow warrior and friend,
RPonce