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Synovial Sarcoma - Online Support Group

Head and neck synovial sarcoma in kids


#1

Hello

Anyone out there with diagnosis of paediatric head and neck region synovial sarcoma? Would like to hear from them and share treatment options, remission period etc
Please respond if any


#2

Hello Mito

I’m a Moderator for Ben’s Friends, and I’m sorry to see that you haven’t got any responses yet to your post. You’ve already done a site search, and posted on some threads, which is awesome.

I’m hoping that my comment will “bump” this discussion up the activity list, where others will see it.

All the best to you and your son

Seenie from Moderator Support


#3

I was diagnosed at 7 years(1979) old with fibrosarcoma in my right neck, then at 26(1998) with synovial sarcoma same place. I’ve had surgeries and went to radiation 2 times(I quit going) after my last exploratory surgery had a positive margin. Next may I will be a 40 year survivor. I’m not sure of your circumstances, but hope this gives you hope.


#4

Good to hear from you. Thx for your reply.

Would you mind giving more details?
In the initial time it was confirmed fibrosarcoma? What was the grade and tumor size? How long you did radiation then? Any chemo?
In the gap of 20 yrs your scans were always clear I suppose… I wonder how it reappear with such long span as I hear that if there is no symptoms for 5 yrs then it’s kind of disease free

do you still have scans? Which hospital you go?
Thx again


#5

Thank you for your message. It does give hope! My nephew has received some good news. 2 of the tumors in lungs have disappeared and all the others as well as the ones in knee and hip have gotten smaller. He has 2 more rounds of chemo then will have surgery. Diagnosed at stage 4 we werent sure if there was any hope but with faith and prayers he is responding to treatment. I will share your story.Thank you


#6
This is a good news hope all the best to ur nephew and all patients . My son has synovial sarcoma in the part around the trachea , can u tell me what kind of chemo is being used pls, since we had ifos and doxo, and after a year now it is growing again , have anyone tried any other treatment that might help

#7

The first time it was a Grade 1 fibrosarcoma(1979 Greenville Hospital, Greenville PA). I was seen at Cleveland Clinic following that surgery. Second time it was a 1 x .8 x .6 cm synovial sarcoma(1996 Meadville Medical Center, Meadville, PA). Third time Recurrent Multifocal Low Grade Spindle Cell Sarcoma(1998 Universtity of Pittsburgh Medical Center). I had a positive margin and they sent me to radiation in Sandy Lake, PA. I only went to two radiation appointments and just stopped going. I didn’t see any cancer doctors for a little over 10 years(my choice). I have had some issues and have seen Dr.'s now regarding my cancer past. I have however how no more surgeries or treatments since the radiation. I do not have any of my scans. I do have the paper copies of my medical history. I also wonder why there was such a long time between the two. It is so rare, that I feel the doctors are even baffled by the distance. Just feeling lucky at this point in my life. I hope everything goes well, for you and yours!


#8

Best Wishes for your nephew! Please keep us posted.


#9

Thanks Leeann. My prayers for your good health.