Hello, just wanna say thank you in advance for reading this post.
Okay, so I was officially diagnosed with synovial sarcoma on March 7th 2012 in my right ankle after having severe pain and stiffness, to the point where I couldn't put my right foot flat on the ground anymore, since about 2010-2011. My doctor finally decided to get me an MRI after nothing showed on X-Rays, and I wasn't achieving results from physio. I did the MRI, then another MRI with contrast, and that's when they found my 5 cubic cm tumor. I don't know who, but somewhere along the way before I got the results of the MRI, one doctor diagnosed it as synovial sarcoma, and that's what I was told I had on March 7. I was referred to Sick Kid's Hospital, and went in for surgery on May 16. It was difficult for them to get negative margins because of how tangled in the tumor was around my nerves and joints, but they did, but of course the area isn't completely clean. After the surgery, my surgeon said he had a good idea it was actually benign, up until 2 days later when we got the pathologist report. It was confirmed synovial sarcoma at that point. Next step was to check my lungs for spots. They found 4 spots, but they were all under 4 mm, so we did a biopsy, and it came back benign. That was a huge relief. Prior to the biopsy we were convinced it was malignant, so I had planned to do chemo and go from there. But things have changed now. There is no metastasis that we know of, so now we need to worry about my leg.
My doctor wants me to amputate asap. Although I know this wouldn't certainly stop metastasis later on, I know it's important to control the primary site, and that could definitely put the odds in my favour. But I am scared. I don't want to make the wrong decision. I am only in my first year of Highschool right now, and I don't know how things will turn out, but it's all pending on this amputation. Does anyone have advice, please? Should I go ahead with a below-knee amputation? With or without chemo? Or should I just do chemo alone? I'm leaning away from radiation because it just seems like it's not worth it if it can still come back. If anyone has experience with this, PLEASE reply. In the end, I want to do what will make my life longer, but I don't want to suffer with the wrong decision. If there is something else I can do that will be effective, other than amputation, I'll do it. Please help everyone, and I hope you're all staying strong.
P.S. If it does come down to it, and it will help me live a long life, I will do the amputation. I'm okay if it comes down to that. But, if there is away I can avoid it, but just as effectively live a long life, I am all for it.