Synovial sarcoma: Proton or conventional radiation after surgery?
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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@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?
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.
Wishing your daughter the best outcome possible this week with her surgery and rehab.
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.
@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?
@winter23, just thought I'd check in. How is your daughter doing? How are YOU doing?
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
@winter23, I, too, look forward to the tips that others can offer from their personal experiences, like @forge55 and @tynerlisa.
It’s not surprising that your daughter is experiencing so many emotions. Amputation of 3 fingers is a loss not only of her fingers but how she navigates her world from her career to her sports and pleasures. This loss is real and she may be feeling emotions similar to mourning.
Do you think it might help her to speak with someone at the cancer center where she receives care?
See this article:
– How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/
Her hand is healing now that radiation is complete. Now she is dreading the amputation surgery on Feb 19th. She has emotional times. Thank you for your concern. I wonder if any of the members have advice on what to expect after surgery or tips on any things she/we can do to make this time less difficult. Any medical aids we should buy for future? She is an athlete & has completed 2 triathlons. She enjoys swimming,cross country skiing, and biking. She is an auto mechanic by trade .
Hi @winter23, I can imagine that you are worried and terrified for your daughter. I'm tagging other members like @rgotto41 @sauer01 @ellengrubb @damlady2 @vivianfromaz who have experience with soft tissue sarcoma.
I'm sorry that she will lose 3 of her fingers and that the daily radiation has caused such painful swelling and blistering. Is radiation complete now? Is the hand slowly healing? How is she doing?