Quantcast

Synovial Sarcoma - Online Support Group

Hi everyone


#1

Hello everyone and thank you for accepting me here. I was diagnosed in July 2013 after discovering a pain full mass in my right thigh close to my hip. After being told its just scar tissue from a pulled muscle I was put into pt. It was very pain full and didn't help at all. They even had me squish it around with a rolling pin, which I pray didn't spread it. Finally I got a second opinion and after an inconclusive biopsy, decided to have it removed. It was taken out with wide margins and a week later, I got the call. It took the breath outta me. It was 10cm and turned out to be ss. The things that go through your head are very pain full to think about. My daughter had just turned one. I've been married for two. I'm thank full for my doctor at UW at Madison Wisconsin as well as the staff at Turville Bay radiation oncology. I received six weeks of radiation and a clear chest ct. I am left with some pretty bad nerve damage in my right leg due to the size and the fact that it was wrapped around my sciatic nerve. I think that's the worst part, not being able to take care of my family any longer. I've been a carpenter all my adult life and now its doubtful I'll be able to do anymore labor jobs at all. We moved back to Florida to be closer to my family but we're thinking of going back to Wisconsin. My doctors there were great. It is very encouraging reading all of your stories here and you are all in my prayers. Thank you.


#2

Is the nerve damage causing constant pain or just difficulty controlling your leg?


#3

You are in our prayers too, Chris. Wish the best for you and your family!


#4

Prayers coming your way. I also have Synovial Sarcoma. This an outstanding site where you can much needed information about your cancer.


#5

Sorry to hear your story and that you have to be in the position to be on this site! Still, glad to have met you here. I hope someone can get the pain and disability in check for you... keep searching. Clear lungs is soooo good! Many of us here would be happy to hear that for ourselves. You have been through quite a shock. I'm glad you have gotten to the point where you are at. Family is so important for support and love. It means everything. Perhaps someone on here knows of a sarcoma center that is superb and close to Florida. Hang in there, my friend.


#6

Chris,
My origininal tumor was a large painful mass in my right thigh also. I didn’t have clean margins after two surgeries but that was in 1994. I can’t say this has been an easy journey but I’m still here and am blessed to be still raising my daughters. Hang in there, we’re all here for you.
K


#7


It is both pain full and difficult to put much weight on my leg. Sometime I get spasms in my leg and its scary to drive. Always sore, with "lightning strike" pain going down my leg. Do you know if nerves heal or grow back over time?
Elodie Espesset said:

Is the nerve damage causing constant pain or just difficulty controlling your leg?


#8

So sorry Chris, it's hard to live in pain. It's also hard to not be able to take care of your family when that is what you're used to doing. While I was a stay at home mom for most of my children's upbringing, then working part time as they got older and left for college, it's hard to not only not be able to work, but I have such a hard time right now not even being able to do the things that I consider taking care of my family, like cooking, cleaning, and laundry.

While it's unfortunate you are suffering from nerve damage, I'm thrilled for you that your surgery resulted in clear margins. That's half the battle right there! I don't know how nerve damage heals over time, but for your sake, I hope it does.


#9

My personal experience with amputation tells me it may get better if you're lucky like me... There are doctors specialized in this type of issues. You may want to contact MiMi Olsson who is a member here and has probably read all the publications out there about neuropathic pain. Her grand-daughter, a chondrosarcoma survivor, has suffered from chronic neuropathic pain. And she probably can give suggestions on how to approach the problem. You can find her page here:

http://www.synovialsarcomasurvivors.org/profile/MiMiOlsson

Chris said:


It is both pain full and difficult to put much weight on my leg. Sometime I get spasms in my leg and its scary to drive. Always sore, with "lightning strike" pain going down my leg. Do you know if nerves heal or grow back over time?
Elodie Espesset said:

Is the nerve damage causing constant pain or just difficulty controlling your leg?