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Synovial Sarcoma - Online Support Group

Almost 2 years out from Synovial Sarcoma


#1

July 2011 my step father found out he had a large synoval sarcoma in his thigh.

I wanted to give people an idea of what happened to my step father and how he is doing now.

1. Matt went to his local provider who referred him to a general surgeon.

2. General surgeon took one look at his thigh and sent him down for an MRI.

3. General surgeon called us a day later and told Matt he had a Sarcoma and that agreesive treament and an amputation was iminate.

4. We decided to have his treatment done at a larger facility that actually had Ortho Oncologist's at Oregon Health & Science University. It was about 110 miles away but well worth the travels.

5. Matt had his biospy in clinic by the Ortho Oncology team and it was confrmed a week later for a Synovial Sarcoma.

6. The treament plan was given an the port was placed in late Aug.

7. Chemo started in Aug, with 3 rounds of chemo being in-house 4 days each time.

8. Last round of Chemo, tehy also did Radiation at the tumor site.

(Oh he never had any mets)

9. Removal was done in Oct, clean margins of the 7 cm tumor.

10. Another 3 chemo tremetns with 4 day in-house stays.

11. It's now 2012 and Matt is back to work in Feb.

12. Matt has a lot of swelling at teh surgical site, but never got an infection!

13. In May he'll have another follow up which has been about every 5 months. So far all his scans are clean and the surgical site is fantastic. Very minimal swelling, and jsut a bit of nerve damange done, but he has his leg!

14. We just can't wait to hit that 2 year mark which they say is when things start to get a bit less worrisome.

They did do a precentage on his orginal and said he had a 63% chance of it not coming back, it's not the best but it's not the worst. I know they base teh number off all in indications and it spits out their projection, not sure teh accuracy to that test.

Anyway when I first startd looked at this site I didn't see a lot of follow up after people found out they or a loved one had Sarcoma.


#2

I was diagnosed with Synovial sarcoma in July of 2007, on the left side of my abdominal wall with caking on the omental wall. I had chemo and surgery with clear margins. I remained cancer free for 3 years, and then in Dec. 2010 I had my first recurrence a small nodule 0.7cm in the left lung. I had surgery with clear margins. Then again in Dec of 2011 during a scan they found bilobial masses again in the left lung this time a bit more aggressive 1-nodule was 3.3cm and the other 3.1cm. I had chemo bit this time the chemo didn't work, the masses were stable but no shrinkage. At that point we decided to have surgery and thankfully there were clear margins, my last three scans have been clean my next scan is April 10th, I'm hoping for clean scans.


#3

Wow Sally you've been through a lot! Hoping to a clean scan for you!


#4

great update!


#5

Thanks for the follow ups... the unknown is a big part of my fear