Synovial Sarcoma of the Left Foot

Chaostocalm43

I was just diagnosed with synovial sarcoma last week on my left foot. It probably has been growing there underneath for a long time, however, it has grown very fast lately and now I am looking a removing my foot to keep it from spreading. The doctor, who is an awesome specialist at the cancer center at IUPUI, said that it is so entertwined with my foot, heel and ankle that even if I chose to do infusion therapy first and then see how much he could remove, that he would not be sure he could remove it all, even though he specializes in difficult cases. He basically said if I were a famiy member he would say lose my foot to save my life. I'm very overwhelmed and confused about options, what they are, medical terms, etc...I've never went through anything this dramatic before. On top of that, I was already trying to find full time work since I lost my job 2 years ago and am only working temp jobs, no insurance and not enough money coming in and staying with a friend til I got on my feet and find my own place. Now I'm looking at filing for disability, hoping I get it, medicaid, and any other help out there to pay for a place to live, my car payment since I need my car right now, and just all these medical expenses rolling in. I believe I can survive losing my foot, however, I want to know more about treatment options, whether chemo is going to help after surgery, or this infusion thing he mentioned is worth it, he seems to be uncertain about it, etc. I don't know how indepth or painful all this is going to be and am trying to psych myself up for it. I had a scan of my lungs done to see if its there but haven't heard back yet...this thing on my foot reminds me of those squishy balls that if I squeezed it, the eyeballs would pop out...it went from a small marble size to the size of an egg in 2 months. It scares me. I'm 43, single and pretty much on my own...I'm a writer so I'll journal about my experience...it will be cathartic to do so. Any advice from those who have been through this is very helpful. Thank you!

elodie

I am a synovial sarcoma
I am a synovial sarcoma survivor. I had my leg amputated above the knee.
I listed all the websites that have been useful for me since my diagnosis on a google site:
http://sites.google.com/site/synovialsarcoma/survivortoolkit
About the amputation, all I can say is that I don't regret my own amputation. I met recently someone who had the ILP (isolated limb perfusion) and managed to save his leg this way. But now he has inoperable lung mets and I don't envy him.
About the insurance situation, it sounds very scary. I am wondering if a social worker from your cancer center can help you manage the financial issues.

Good luck!