Diagnosed with sarcoma? Let's share

Jeff did you do a radiation series followup to your surgery? I had a synovial sarcoma in my jaw. Danial Price and Eric Moore did the surgery and reconstruction and I came out with clear margins. Radiation has been suggested as a followup for insurance and I’m debating the pros and cons. I’m 78 now.

I had pharyngeal cancer in 2012. Surgery,chemo, and radiation. Now this new tumor in the same area and extending into my jaw. My surgery to remove the tumor seems to have gone really well. Now they suggest a 6 week followup course of radiation (proton) to boost the probability of no recurrence. I’m 78, widowed, already somewhat limited by aftereffects of the earlier treatments. I’m trying to balance the additional insurance against recurrence against the reduced quality of remaining life associated with another radiation series. It’s a guessing game I know but I’m leaning toward foregoing the radiation in favor of making the best I can of time remaining.

Welcome to Connect, @rgotto41. I'd like to bring @superdave, @amd123 and @disneyrn who have experience with synovial sarcoma.

Rgotto41, we look forward to getting to know more about you. When were you diagnosed and what treatments will you have or have you had? Got any questions for us?

synovial sarcoma - right jaw

Good point and you can message your medical team with any questions/concerns you may have. The Portal is the best for all info

If you want to get more details, in between appointments, you can sign into the online Patient Portal. and find out.

About four years ago they found a soft tissue sarcoma next to my tummy. I underwent radiation treatment and surgery. The tumor was dead when it was removed. Then a short time after I went to Mayo,Jacksonville and Dr Attia. He found stage 4 cancer in my lungs and upper right leg. After six hellish bouts of chemo and surgery I have been cancer free. But I am on a maintenance chemo every 6-8 weeks. FYI........... I have never asked the medical term for my sarcoma

Hi Jeff, I sent you a message through the portal here. : )

When my laryngeal chondrosarcoma (less than 200 cases ever) was diagnosed the first opinion I received from one of the top 10 surgeons in this area was that I may end up with a permanent trach and maybe a feeding tube. I ended up visiting 5 other surgeons and Mayo was the only place that provided me with hope that they could remove all the cancer and maintain the majority of functionality. I strongly advise you to seek additional opinions and Mayo should be at the top of that list.

Hello @raeangel319. FS variant here to. If it is Mayo Minnesota you are looking at, Dr Randall Roenigk is a bit of a legend among dfsp’ers. Not sure how many fs subtype he has treated, but he has performed successful Mohs on patients others have refused. For FS variant, the follow up is equally as important as the surgery itself. The FS variant has a very real increase in the risk of mets. Lifelong follow up and regular scans should comprise part of the approach to post operative care. Wish you well and keep posting about your progress.