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Diagnosed with sarcoma? Let's share
Sarcoma | Last Active: 2 days ago | Replies (865)Comment receiving replies
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.
Replies to "I too have Synovial sarcoma which started in my calf. I had it removed and radiated..."
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 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 .
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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!