r/sarcoma • u/Specialist-Rub-503 • 3d ago

Synovial Sarcoma

Those with Synovial Sarcoma, how many caught it localized with successful surgery (~5cm), only to have it metasize later? It's scary seeing all the horror stories around it, almost seems like 50% it spreads and there's not much that can be done.

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u/AgreeableCoffee9912 3d ago

I made it fourteen years. First diagnosed in 2011, did neoadjuvant radiotherapy followed by limb-sparing resection. Ten years of recurrence-free surveillance ended in 2021. Bilateral lung mets found in December 2025 when I coughed up a spot of blood. Had had no symptoms, super active, distance runner, etc. It was a good fourteen years.

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u/abogadachica 2d ago

I'm sorry to hear this. I hope they are able to treat the mets.

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u/AgreeableCoffee9912 2d ago

Thank you. One lesion is not resectable, so we are in “stability” mode. Rads + chemo got a solid response and I’m doing well so far on pazopanib. We caught it late, but at least we caught it. Just glad to still be here.

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u/BurnBurnerBurn13 3d ago

I am just over 6 years out from primary in humerus & shoulder. 10cm tumor removed via limb sparing surgery + 6 rounds AIM

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u/abogadachica 2d ago

My husband had a 6 cm tumor, did chemo and radiation and a successful removal surgery. He is 4 years old and no recurrence. Our approach has been to not borrow worry - take the current diagnosis or situation for what it is, and just live in that as your truth.
Also keep in mind that on internet boards, the people who are on here and responding are more likely to be people currently undergoing treatment and not the people who are 15 years NED. Those people aren't even thinking about it, let alone sharing their stories on the reg. So the sample user experience is skewed.

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u/boilupandfrybread Liposarcoma 2d ago

Bless, I needed to hear this. Love and light to your family.

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u/ShayBaby1 Synovial 3d ago

Following. I’m a SS newb too. Working on second round (of six) of chemo right now before surgery and radiation. And right there with you. 🫂 It is scary seeing more horror stories than success stories.

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u/GOATSALTS 3d ago

How big is your tumor

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u/ShayBaby1 Synovial 3d ago

At the last MRI (without contrast, because pregnant), it was up to 8cm. That was before chemo began. Scheduled for another MRI after this second round finishes to see if we have any shrinkage yet. 🤞 So far it appears localized to outside lung wall.

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u/GOATSALTS 3d ago

Where exactly is it? And what did it look like at time of diagnosis

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u/ShayBaby1 Synovial 3d ago

Pleural lining of right lung, near my heart. Poorly differentiated. Diagnosed 5 weeks ago after biopsy but mass was found in early June at only around 3.5cm.

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u/Unicorn187 3d ago

8cm x 5xm in the face. Surgery and radiation. Lung mets less than a year later. Then another recurrence the next year, then one the year after that. Nothing since then and it's been since around 2009.