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Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: 23 hours ago | Replies (919)
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@stewgr

Hi
Stewart here, 40 yo
Been diagnosed with Synovial Sarcoma of the prostate, which is apparently very rare.
14cm mass in my pelvis and mets to the lungs.
Felt no symptoms until i started having urinary symptoms and then retention. Thats when the mass was found. All up 3 weeks from symptoms to diagnosis.
Best they can offer is palliative radiation and chemo

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Replies to "Hi Stewart here, 40 yo Been diagnosed with Synovial Sarcoma of the prostate, which is apparently..."
jeshaw6801 | @jeshaw6801 | Feb 22 1:55pm

Hugs to you.

Please work with a sarcoma center as they are shown to have higher survival rates. I have R-LMS which is also rare . The best center is md Anderson in Texas but each state could lay claim to their centers ( including Mayo. If going to a sarcoma center and offered only palliative care...I would hitail it to the best center .... Md Anderson. I think they do video appts too.

If all they offer is pallitive

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Colleen Young, Connect Director | @colleenyoung | Mar 5 3:54pm

Hi @stewgr, You're right. Synovial sarcoma of the prostate is very rare. I'm sure this is one of those times you wish you weren't in a club of very few. At 40 it must be especially hard to accept that treatment is palliative and not curative.

While the diagnosis is unique, you may still wish to join the discussions in the Prostate Cancer support group here: https://connect.mayoclinic.org/group/prostate-cancer/

There you will find other men who have had pelvic radiation and chemo treatments to help to know what to expect.

Stew, have you started treatment? How are you doing?

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