Synovial Sarcoma - Online Support Group

Biopsy revealed Synovial Sarcoma in my 9 yr old son


Thank you for posting this articles. I got more information out of them than from my Dr.


My son’s newest MRI shows tumor is now 5.5 x 4.6 x 2.1 cm - this was 49 days past the first MRI. He still hasn’t had surgery, but it is currently scheduled for next week. Being that it is now over 5.5 cm, per COG guidelines he should receive adjuvant chemo, correct?

The current NCI PDQ states that adjuvant chemo and radiation are in order for SS over 5 cm. What I am wondering/want to discuss with the doctor is if neoadjuvant chemo may be a better call to try to shrink the tumor prior to surgery. The current surgical plan is extreme reconstruction that will be very invasive. I’d love for them to provide a way to effectively treat him without a total leg/knee reconstruction.


You will have the surgery just in a few days. Removing it ASAP may be better than trying Chemo right away. I heard too that recovery after surgery is better if they are not giving you the chemo drugs.


Never hesitate to ask your doctors. They know best.
My 2 cents: the 5cm cutoff is artificial. 5.5cm doesn’t sound significantly larger than 4.8cm. It does not look like the tumor is highly aggressive so chances are it won’t respond to chemo. Of course, the best way to find out is to do chemo before surgery but is it worth the wait? Working on radiated tissue may be more difficult than working on healthy tissue (my surgeon told me it makes the tissue sticky) so while radiation could potentially enhance margins, it may make the surgeon’s job more difficult when the reconstruction is expected to be complex.


My son was also diagnosed at the age of 9 with synovial sarcoma. He is 10 now and cancer free. We also went to CHOA for treatment. My sons tumor was over 5 cm so he did surgery, chemo and radiation. I’m surprised the oncologist told you that about SS. How are things today?