Diagnosed with sarcoma? Let's share

I was recently diagnosed with Synovial Sarcoma. I had one tumor in my left lung and I have a large tumor in my mediastinum (near my heart). The doctors are trying to determine a treatment plan to remove the large tumor. The surgeon who removed the small tumor said that he would not operate on me to remove the larger tumor because the surgery would be too risky. I hope your niece get better with the treatments she is taking. I am in a waiting stage. I don't know if they are going to operate or give me treatments first. It took them three months to determine what type of cancer I had. Blessings to you and your family.

Here, I am with an update! Feeling, overwhelmed! I saw my oncologist at city of hope (COH) on Monday and she wants me to try the a fourth hormone blocker. Side effects are not something that I can live with and work. But that is the least of my worries right now I still away appointment with mayo clinic and little over two weeks from now for the huge 10cm x 2.2cm endochondroma which may actually be a Chondrosarcoma of my rt femor. My PCP and my oncologist fused to order an MRI for it and tell me I have to wait until I see mayo clinic. I have already waited a month. Two more weeks to go and hopefully I will have some answers as to what this thing is in my leg. On top of that when I saw my oncologist on Monday, she told me that my bloodwork revealed that I may have bone cancer. She said that she wanted to draw my blood again in two weeks and if it still looks like this, then she wants to do a bone marrow biopsy. It just seems as though my whole body is being eaten up by cancer and I am getting so tired of fighting it already because I can’t get anyone to listen to me or talk to me or see me. They just tell me I have to wait. And wait some more. Yet they tell me that cancer doesn’t wait. That is what the advertisement for COH on TV says cancer doesn’t weight, but they just keep telling me to wait. I almost feel like I am living in a Third World country because I can’t get a doctor to see me unless I wait and I certainly have no one to talk to about it. My oncologist at COH told me she could not speak to me about tumor in my leg and she did not want to share much information with me about the possibility that I might have bone cancer until she finds out for sure. So they just scare me and then send me home.

@mickeyambrose49, you may also be interested in these related discussions:
- Chondrosarcoma
https://connect.mayoclinic.org/discussion/chondrosarcoma/
- Cricoid Chondrosarcoma
https://connect.mayoclinic.org/discussion/cricoid-chondrosarcoma/
- Enchondroma, vs. Chondrosarcoma
https://connect.mayoclinic.org/discussion/enchondroma-vs-chondrosarcooma/

Hi @mywimb569 and @janetamyshapiro1956, you will find others talking about synovial sarcoma in this related discussions:
https://connect.mayoclinic.org/search/?search=synovial+sarcoma

I pray he can find an immunotherapy that will slow, stop or heal the sarcoma. They are nasty! Please keep this post updated on his progress.

You are very brave . I admire your courage and strength . My husband has a Chrondrosacroma of the skull. He has had two major surgies . The tumor came back after 27years. First time , he had radiation. This time they could not get it all, because it was to close to his curated artery . There is no treatment at this current time ,but wait and see until
next scan .

Dad has sarcoma metastasised to his lungs and is on 3 weeks Trabectadin with very little side effects (nausea which is controlled by anti sickness and he’s never actually been sick). Last CT showed shrinkage so it’s holding them back at the mo - just putting it out there x

You have made a brave decision to avoid further treatment. I am 77 years old and I think that if I had to choose, I would make the same choice that you have made. For the record, the knee joint replacement would not have been necessary had it not been for the sarcoma. In fact the joint replacement was the easiest part of the whole procedure. I refer to it as the "unitended consequence" of the sarcoma. However, the hardware did make the radiation treatment a bit difficult.
In Coleen's introduction to this discussion group she mentions that Sarcomas are rare. I can endorse that statement. From the time I first visited my doctor with a swollen knee joint until the time that pathologists finally diagnosed my sarcoma it took over 6 months. At first they could not identify the "atypical" cells that they found in the first biopsy. Then, after a full open surgery biopsy one of 9 pathologists identified the sarcoma. Orthopedic surgeon with many years of experience had never seen one!

I too have Synovial sarcoma which started in my calf. I had it removed and radiated - 25 treatments. It healed quite rapidly. However, it returned in 18 months. Had it removed again and also found it matastisiiced to my lungs.
I’m 75 and decided not to do chemo or other chemicals because the cure rate is low and side affects poor. I’ve decided on quality of life and no treatments. I am doing some home immune therapy. It’s been 9 months since last surgery. I feel fine, plenty of energy and positive outlook on the whole situation.
The tumor began growing again in my calf and is getting painful to walk. But the quality time I’ve had with my family is well worth it.
I’m praying your knee surgery stopped the Scarcoma.
I also had both knees replaced in 2019. It took a while for walking to become normal, and I had to push through some pain…with success.

I have/had an epithelial synovial sarcoma on my knee. To attempt to remove it, surgeon did a full knee joint removal and replacement. This was followed by a program of radiation treatments. However, six months after the surgery ( three months since radiation) my knee is still swollen. How long should I have to wait before knowing if the sarcoma has been cured?