Synovial Sarcoma Treatments

Synovial Sarcoma Survivors - Online Patient Support Group

Follow up scan result

Just wanted to update the group how happy I’m today after my child’s scan report. We did CT of head neck thorax and all looks perfectly fine.
I think there is a lot of good hope for those in similar situation, with God’s grace nothing is impossible. I feel low grade SS, small tumor size etc can have good outcome…
His doctor says next can be a chest x-ray after six months. What a relief…
I update the status here so that others in similar situation can be more optimistic. I used to search a lot for someone in my similar situation but it was hard to find. I presume once everything goes well people tend to not update in the forum…

What great news, Mito! How is your son handling all of this? Handling “things” isn’t always easy for a young teen.

Thanks for posting: it’s great to get positive news. People need to hear that, I agree. But as you say, a lot of people tend to move on when things are going well.

I also think that sometimes people are reluctant to share good news for fear of making others feel upset that their news isn’t as happy. It’s difficult to know what to do, isn’t it?

Keep us updated on how things are going with you and your son, OK?

Seenie from ModSupport

Hey Miro I’m happy to hear that your son is doing good! I was around his age when I was diagnosed & I just turned 41. I had a small ss in my knee & was lucky enough to be cancer free after my surgery, chemo & radiation & I remain cancer free now so its possible especially with today’s advancements. When I was diagnosed they said had my tumor been bigger they would have amputated. And eventually this will feel like a lifetime ago even though it dominates your life right now. Tell him to stay up on his regular checkups because now that I have been in remission for 29 years I forget to go back for all the tests & follow ups I’m supposed to do. And I really haven’t had any side effects or problems from the chemo or radiation. All of this will be a distant memory believe it or not. Thank you for sharing & I will pray that your son stays cancer free!

Sure I’ll do.
I know… It’s not good news for all but at least it brings hope and positive feeling to some…

Thanks for your response😊

Hi Nikki
Thanks for your reply. So glad to hear that you’re doing great…
What was your tumor size When diagnosed? Lucky that you found it at very early stage. How long did you do your follow up scans? Have you completely stopped your follow ups?
My :pray:prayers for you. And thanks for praying for my son too
Keep in touch in the forum

I’m still supposed to go every year for my follow up scans. I went last summer and hopefully everything opens back up and I can go this summer at some point. I don’t remember the exact measurements but I know it was about the size of the tip of a pinky finger so I got lucky that it was caught early. How is your son doing?

My son is perfectly fine, He’s 2 yrs plus now. Scans in six months and is Ned. God’s grace :pray:

Glad that you’re keeping safe :pray:

I’m glad he’s doing good & I will keep him in my prayers but I’m sure everything will turn out fine!


His Dr was saying 2 yrs plus there’s nothing to worry…
Is that what drs say to you? How long you advised for scans?

I was told that I had to have a yearly visit with scans & an echo of my heart because I had a chemo that causes heart failure in some people.

1 Like

Hi Nikki and Mito. I am a SS survivor of 33 years. I did the 3 month check up then graduated to 6 months and finally yearly. So a total of 7 years of going for check ups. I also had a chemo that messed with my heart and when I was in for Ovarian cancer I met others that had, had chemo the same time I did and they were now waiting for heart transplants. My heart is still super healthy its my leg that isn’t worth a crap. lol
I was 21 when I got mine and I was really into sports, actually teaching PE so I know how your son felt when everything came to a stand still. It is hard to stop doing what you love and enjoy but that was only temporary. And even though I still can’t do a lot of those things, due to other complications, I have found a lot of new interest, new hobbies and have met a lot of new people. That never would have happened if I had stayed my other course. It is weird how things in life good and bad happen and how they change us. Sometimes it is frustrating waiting and not knowing, but then it is amazing when things come together.
Yes I have had other cancers but none of them are because of the SS. Yes I have had other complications from the chemo and rad but they didn’t happen until 10 and 20 years later. Yes I use a crutch to help me get around but I also use it to knock things off the top shelf. lol
I read it has been 2 years for your son now. I hope he is still doing well and embracing the new and the silver linings.
Take care!

1 Like