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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Hi @rgotto41 that's great that the surgery went well with clear margins.

I wanted to introduce you to @merpreb @ristene and @puprluvr as they all have undergone proton radiation.

How have you been feeling since the mandibulectomy and free flab reconstruction? What has your doctor told you about proton radiation treatment?

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I had 25 proton radiation treatments for 5 weeks @ Mayo in Rochester plus one weekly chemo for 5 weeks. I suffered no ill effects other than fatigue that gradullay came on after about 2-3 weeks. I drank a lot of fluids, walked to my appointments, went to a gym a few times and basically tried to move every day. I also ate a balance of healthy foods and did indulge in ice cream, mac and cheese and other higher caloric foods to maintain my weight, which was a concern because of chemo mainly. Proton radiation was recommended for my type of cancer(EC) because of how it pinpoints the cancer with a more precise beam and does little to no damage to other adjacent organs. Bottom line-it shrunk my tumor by 2/3 and Im confident the chemo killed the cancer. No fear and best wishes with your journey.

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@ethanmcconkey

Hi @rgotto41 that's great that the surgery went well with clear margins.

I wanted to introduce you to @merpreb @ristene and @puprluvr as they all have undergone proton radiation.

How have you been feeling since the mandibulectomy and free flab reconstruction? What has your doctor told you about proton radiation treatment?

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I seem to be recovering well. The swelling in my face is receding, the leg is healing, and I’m feeling better daily. The drs gave me minimal info on the proton treatment other than that it would further reduce the probability of recurrence and that I should expect “quality of life” side effects with time. I had conventional radiation treatments in 2012 for pharyngeal cancer so have already been down that road. I have significant damage to my cervical spine, extensive nerve and muscle damage in my neck and upper torso, and impaired swallowing (I have a peg tube for nutrition). This most recent cancer may result from that earlier treatment. That has made me hesitant to proceed.

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@rgotto41

I seem to be recovering well. The swelling in my face is receding, the leg is healing, and I’m feeling better daily. The drs gave me minimal info on the proton treatment other than that it would further reduce the probability of recurrence and that I should expect “quality of life” side effects with time. I had conventional radiation treatments in 2012 for pharyngeal cancer so have already been down that road. I have significant damage to my cervical spine, extensive nerve and muscle damage in my neck and upper torso, and impaired swallowing (I have a peg tube for nutrition). This most recent cancer may result from that earlier treatment. That has made me hesitant to proceed.

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You’ve been thru a lot and I certainly understand your hesitation about proton radiation. I’m hoping you’ll receive many more posts from people that have received proton radiation as well as from your research on the internet from hospitals and clinics that administer proton radiation. Hang in there!

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Hi, @rgotto41 – a couple of other members who may have some thoughts for you on proton vs. conventional radiation treatment are @paulaakelley70 @wayno1234 @jstow07 @elvandi.

rgotto41 – do you have specific concerns about proton radiation therapy?

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My daughter (37) has had a tumor removed from the palm of her hand . It was a large mass. Clear cell sarcoma. Just completed 5 weeks of daily radiation causing brutal swelling & blisters. Scheduled for removal of 3 fingers in 5 weeks. Will be left with thumb & pinkie (best possible outcome) Has anyone else had this experience? We are terrified parents.

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@winter23

My daughter (37) has had a tumor removed from the palm of her hand . It was a large mass. Clear cell sarcoma. Just completed 5 weeks of daily radiation causing brutal swelling & blisters. Scheduled for removal of 3 fingers in 5 weeks. Will be left with thumb & pinkie (best possible outcome) Has anyone else had this experience? We are terrified parents.

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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?

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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 .

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@winter23

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 .

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@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/

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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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