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Synovial Sarcoma - Online Support Group

It’s been a while


#1

Hi everyone. I posted about 3 years ago but I never followed through and I believe I was going through some denial. Also we didn’t have health insurance for us quite some time, which made it easy to avoid the situation.
In 2016 I had a left upper lobectomy to remove a large mass. It took over a month to find out it was SS. I had my first scan since surgery just three weeks ago and they found a small 7 mm size lesion in my right lung. The oncologist that I saw said that he does not know a lot about SS but just wants me to come back in May for a new scan. I also have three tumors in my thyroid and for the last year have been losing muscle mass on the left side of my body. I feel like nobody is looking at the big picture and I just don’t know what to do. I was considering getting a second opinion at the cancer treatment center of America in Chicago but I’m also wondering if anybody else has any suggestions of where to go I am located in Michigan .


#2

Sorry to hear this news, I feel that you should not waste any time and that you should meet up with a sarcoma specialist asap.
What treatments have you got during your initial diagnosis? How big that tumor was?

Please keep us posted, hope someone could help you of a sarcoma centre near your place…


#3

The initial tumor was almost 5cm. The only treatment was the lobectomy. They found the mass in 2012 but said to just watch it, for a while it didn’t change and than in 2015 it grew but they said we will still just watch it. It was not until my 3rd episode of coughing up blood that they decided to take it out.


#4

Please consult with sarcoma specialist and keep us posted. Praying for you

Sarcoma.org.uk is a good website for lot of info including sarcoma centers in the world