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Where do we start?


#1

My 14 y/o son was diagnosed Sept 29. Not knowing it was cancer, we spent 2 years trying to find a doctor who would help him with his pain. Finally an Orthopedic doctor removed the cyst on his ankle only for it to come back as synovial sarcoma. Now we are faced with another surgery and more. We are looking for suggestions on some of the best Pediatric Synovial Centers that anyone may have personal experience with. We live in Atlanta so we don’t have one close by. Also, we have been reading about Proton Beam Therapy and Isolated Limb Infusions. Has anyone used these and should we be looking for centers who offer these? Any suggestions would be greatly appreciated.


#2

There are a few sites out there that list sarcoma referral medical centers throughout the country. Check Sarcoma Foundation of America or The Sarcoma Alliance who show have such information. I’m actually working in a site that does something similar, but it’s not ready yet. I live in Seattle and can highly recommend Seattle Children’s and the sarcoma specialists here, but there are others closer to Atlanta.


#3

I'm a 28 year high grade synovial sarcoma survivor. I was treated at the National Cancer Institute of the National Institutes of Health in Bethesda, Maryland. I was part of a protocol but am not sure if they have any protocols for synovial sarcoma now.

A friend's 3 year old son was treated for Ewing's Sarcoma of his leg at the Children's Oncology Group at the Aflac centers in Atlanta. He messaged me the following: From what I am reading there isn't a consensus on treatment protocol. I would think the team at Aflac would be good to handle an initial case and treat it up front, as they have solid tumor specialists. If there was any sort of complication then I would look to a sarcoma center.

Best of luck - my prayers are with you.


#4

Hi. Emory is a sarcoma center though not a pediatric center. They should be able to help you get started though.

Generally treatment focuses on surgery and or radiation and chemo at some point

Sending positive energy your way for you and your son. I wish life were kinder to our young people. My only advice is to consider everything then decide what is best for your son as a unique person


#5

I had it in my neck, 1995 . I suggest proton radiation.


#6

I know somebody who had isolated limb infusion in France but I don't know anybody in the US. I think it is more commonly used in Europe than in the US unfortunately :-(


#7

I appreciate the info from all of you. So far what I have found is the doctors know enough about it to want us to stay with them, but not enough to have specialty treatment available or to share that info with us. Emory is slated to have a Proton Treatment Center 2016 so that doesn’t help us now unfortunately. Also, there are no “teams” in place here. We will go to one doctor who will send us to another doctor. Right now we’re into 3 weeks of waiting for a reply to our Oncologist about a questionable lymph node. Thankful for Google right now for sure! Trying to find positives even in the little things. :0)


#8

Here is a list of proton therapy centers:

http://www.proton-therapy.org/map.htm

And here is a publication about proton therapy for pediatric tumors:

http://www.ijponline.net/content/40/1/74

I am not sure they use proton therapy on ankles. They may actually be only using it for head/neck, spinal or pelvic tumors (see publication).


#9

Thanks Elodie for the info. The publication will be a good read for my husband and myself.