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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.

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Colleen Young, Connect Director | @colleenyoung | Feb 7, 2023
In reply to @winter23 "Thank you Colleen. That's a good article. Our daughter is being cared for by a number..." + (show)
@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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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 14, 2023

@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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winter23 | @winter23 | Feb 16, 2023

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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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 21, 2023
In reply to @winter23 "Sorry about the garbled message. I hope this works? We just travelled 9 hours to see..." + (show)
@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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winter23 | @winter23 | Feb 23, 2023

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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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 26, 2023
In reply to @winter23 "Surgery was done 2 days ago. Thankfully they only took the 2 middle fingers. She still..." + (show)
@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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