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Children with Synovial Sarcoma


#1

Our son Ben is 7 years old. He was diagnosed with Synovial Sarcoma at 6. January of 2014 was when he was diagnosed. Does anyone have success stories that they could share? Ben's cancer is in his right ankle and the oncologist is talking amputation. He is all finished with chemo. We go this Monday to decide the next step.

Any input would be appreciated!

Thank you all.


#2

Regarding amputation, he would only loose his toe joints and his ankle joint so he should be able to keep running around and have a pretty active childhood once he recovers from treatment. There is an osteosarcoma survivor who lost his leg to the disease and made a few videos about his experience with treatment:

http://www.youtube.com/show/justdontfall


#3

My son did not have chemo or amputation, he had radiation followed by surgery, but our story along with everyone's here is so unique and complex. From all the stories here, It depends so much on where the tumor is as to what course of treatment is recommended, what is crucial is they have to be able to get it all out as the spread is so likely and SS can come back after such a long time. The doc needs to explain the reasons for his choice to you in a way that makes sense, ask lots of questions. Amputation may seem harsh because your precious son is so young, but SS is way scarier. There are many positive amputation stories here. The one thing I do know is that the decision you make will be the right one, and you have to know that and believe in that with all your heart and soul. Wishing you strength & sending lots of love.


#4

Thank you BB.


#5

Please have trust in what the doctors say is best, and know that the right decision to help your son survive will be a blessing. Is there some reason their not planning radiation? Radiation is used to reduce sarcoma when possible, is what I and my daughter was told and it did shrink her primary tumor but surgery wasn't possible because it was on her lower spine. I am so sorry to hear that this demon is interrupting your son's and family's life. Please keep us posted on his progress. I'm sure he will be fine and I will keep you all in my thoughts and prayers.


#6

We have a Dr. Appointment at 10:30 today. We will discuss the next move. How long ago was your daughter diagnosed?


#7

My son is 12 and was diagnosed about a year ago. The tumor was in his lower back, so he had a wide resection. He did not have chemo or radiation. I know extremities are handled much differently so I do not have any great input. However, I wanted to reach out since I do understand how difficult this is with a child. It's been a hard year and lung mets are now our biggest concern. I hope you get good answers from others with extremity SS. Many blessings on making it though the tough decisions ahead.


#8

My son George was dx two days before 11th birthday, it was in his foot, they couldn’t get all of the cancer out of his foot, so amputated just below the knee, don’t regret the amputation as in over 50% of cases it comes back within two yrs . Anything to give him a better chance, they reckon it had been in his foot growing for 7 yrs. he is now 20 months in remission, hope this helps sending love

Di pope


#9


She was diagnosed July 21st 2011, she passed away September 28th 2013. But not due to the synovial sarcoma cancer. She had developed an access in her pelvic and the drainage caused her to suffer a lot and it turn to gas gangrene.
minion mom said:

We have a Dr. Appointment at 10:30 today. We will discuss the next move. How long ago was your daughter diagnosed?


#10

hi my daughter has also ss in lower glutial in 2006 then doctor opertate with surgery and radation but after 7.5 year it is come back in lungs doctors told us followiup time is upto five years so we did five years but here we wrong its followup time is ten and even more and we also find adjuint chemo is also taken then with surgery at its best part and more on herbs to boosting your immune system any thing u need more mail me personily


#11

So sorry to hear about Ben, glad he's finished with chemo. Poor guy, I hate the idea that little kids are going through the same thing I am, a grown adult. I personally can't speak to SS in extremities, as mine is in my lung, but I do know there are long term survivors when the SS area is amputated as clear margins with this nasty cancer is essential for long term prognosis. I also know its so important to have a sarcoma surgeon on board. Trust your doctors, be sure to see the best, and ask all the questions you need to make the decision that's right for you.


#12

Just realized this was from May, how's Ben doing??


#13



Sonnut said:

Just realized this was from May, how's Ben doing??

He's doing good. He had a below knee amputation in July. Hopefully, he will soon be fitted for his Bionic leg.

They are keeping an eye on a couple of nodules on his lung. We are Praying Harder that they prove to be scar tissue.Thank you for asking. Hope you are doing well.

Mary


#14



rk said:

hi my daughter has also ss in lower glutial in 2006 then doctor opertate with surgery and radation but after 7.5 year it is come back in lungs doctors told us followiup time is upto five years so we did five years but here we wrong its followup time is ten and even more and we also find adjuint chemo is also taken then with surgery at its best part and more on herbs to boosting your immune system any thing u need more mail me personily

Thank you. I'm sorry that your daughter is having problems. If you don't mind, I will be Praying for you all. What is your daughters name? Ben taught us to PRAY HARDER, so we are doing just that!!! May you and your family be blessed.

Mary


#15

hi
her name is niharika


#16

Glad to hear he's doing good, what a trooper!


#17

RK: We are almost at the 2 years from resection date, and your post made me stop and think. Can you explain more what signs your daughter had when you did the follow-up. We have been told Will should have scans every year for the rest of his life, and I want to hear about your experience so I don't miss anything. Thank you for your input and I am so sorry for your news. My prayers will be with your family. -- Lori

rk said:

hi my daughter has also ss in lower glutial in 2006 then doctor opertate with surgery and radation but after 7.5 year it is come back in lungs doctors told us followiup time is upto five years so we did five years but here we wrong its followup time is ten and even more and we also find adjuint chemo is also taken then with surgery at its best part and more on herbs to boosting your immune system any thing u need more mail me personily