Adjuvant chemo for Synovial Sarcoma

sugarfr Member Posts: 2 *
edited May 29 in Sarcoma #1

Hello all, Im 29 and had a high grade large tumor (11cm) in my right thigh that was synovial sarcoma. I did 3 rounds of chemo (dox and fofs), then 5 weeks of radiation and then got the tumor removed. The chemo caused tissue death of the tumor and the radiation further reduced it. I’m now a couple months post surgery and even more months post chemo and finally feel like myself again. My hair has grown back to a cute short length, I have my strength and the changes to my body from chemo are just about gone (I had changes to my nail beds but they’re slowly growing out, everything else has resolved). I’m meant to return to work in 2 months time and I had a meeting with my oncologist where he essentially asked how I feel about 2 more rounds of chemo. He said there is limited info but there’s one central paper that indicates there is no additional benefit from doing extra chemo. I’m reading multiple research papers and I’m a medical provider myself (no focus in oncology though) and it really seems like a controversial decision on whether additional chemo is needed because sarcoma is rare and too many types of sarcoma, age groups and risk levels are grouped together in research which can make guidelines difficult to make. I’m trying to decide if I should do the extra chemo or not. Summer is coming up and so is my birthday and I don’t want to lose my hair again and be sick. I’m a really social person and I hated being cooped up because I was neutropenic during chemo. I had QT prolongation from all the nausea meds and ended up fainting once, I had terrible GI symptoms and was just miserable during chemo, it was definitely the worst part of my treatment regimen. Is it worth it to sacrifice my quality of life when there isn’t even proven benefit to additional chemo? I’d love to hear from people who had similar treatment regimens. Also would love to hear from survivors of high grade large synovial sarcoma tumors (especially if you didn’t get an amputation) cause I really need some good news and things to look forward to. Thank you