Synovial sarcoma: Proton or conventional radiation after surgery?

Posted by rgotto41 @rgotto41, Jun 30, 2019

I just completed a mandibulectomy and free flap reconstruction for a synovial sarcoma. Went well with clear margins. Have the option for followup treatment with proton radiation. I had conventional radiation treatment (2012) for pharyngeal cancer with significant long term aftereffects. I’m 78. I’m interested in other’s experience with the proton version.

Interested in more discussions like this? Go to the Sarcoma Support Group.

@winter23

Thank you Colleen. That's a good article. Our daughter is being cared for by a number of doctors and I believe one is a social worker. (we are in Canada & have to drive 10 hours for her surgery) She is wondering about any particular things to bring while staying away for a few weeks to recover. ie: loose sleeve tops & jackets, medical aids to help with eating

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@winter23, just thought I'd check in. How is your daughter doing? How are YOU doing?

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@winter23, you're message was all garbled with html web code. Can you try posting an update again? How are you and your daughter doing?

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Sorry about the garbled message. I hope this works?
We just travelled 9 hours to see my daughter's surgeon who will amputate her 3 middle fingers. She also met with her plastic surgeon. We are back home now. In a week, my daughter & husband will travel back to the big city for her surgery, recovery & some rehab. She is worried about what quality of life she will have after surgery & whether there will be any chance of continuing in her line of work as a mechanic & her passion as an athlete (2 time Ironman competitor). Thank you for reaching out.

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@winter23

Sorry about the garbled message. I hope this works?
We just travelled 9 hours to see my daughter's surgeon who will amputate her 3 middle fingers. She also met with her plastic surgeon. We are back home now. In a week, my daughter & husband will travel back to the big city for her surgery, recovery & some rehab. She is worried about what quality of life she will have after surgery & whether there will be any chance of continuing in her line of work as a mechanic & her passion as an athlete (2 time Ironman competitor). Thank you for reaching out.

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Wishing your daughter the best outcome possible this week with her surgery and rehab.

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Surgery was done 2 days ago. Thankfully they only took the 2 middle fingers. She still has her index finger, thumb & pinky. They are trying to manage the pain & nerve blocker now. They have sent the fingers & lymph nodes away. It will take days to learn if that comes back OK.

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@winter23

Surgery was done 2 days ago. Thankfully they only took the 2 middle fingers. She still has her index finger, thumb & pinky. They are trying to manage the pain & nerve blocker now. They have sent the fingers & lymph nodes away. It will take days to learn if that comes back OK.

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@winter23, that is some good news within a difficult situation. I'm glad they only had to take 2 fingers. Having the index and thumb will help a lot with rehab and future use, I would think.

How is she feeling? Is the pain well managed?

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