Synovial Sarcoma - Online Support Group

Unsure about chemo

I had a synovial sarcoma in my left knee, but a biopsy was only carried out after it was removed as it was assumed to be benign. I’d had it for 8 years but many doctors didnt take my pain seriously, and only when it was removed did they find out what it was. my doctors think it likely wasn’t always cancerous, but it’s not possible to know when it became cancerous, so I dont know how fast it was growing as a cancer.
Anyway now I’m going to have radiotherapy to prevent local reocccurence, and my doctors have offered me chemotherapy as well to reduce the likelihood of it returning elsewhere. They’ve told me that chemotherapy has very limited benefits, if any, but I’m worried if I dont do it and it does come back, will I regret it?
I was just wondering if anyone else has been in this situation, or a similar one, and what they did and how they feel about their decision now?

Sorry to hear it. What you described is also my history. Rt. ankle for many years. Had an MRI 20 yrs ago and told it was nothing. 10 years ago complained again of the pain and new lump - took it out - told not cancer - then two weeks later bad news. I had the same decisions and did the chemo. Ifos and epyrub - rough. 3 years later in lungs - several pie surgeries and then did same chemo again. I is my opinion that the chemo stunned the cancer for 3 years each time. I would do the chemo again. Lots of radiation. Now on T-cell experimental treatment. We will see. Good luck.

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Thank you for your reply, it’s always helpful to hear from someone who had a similar experience and to know how things went for them

I had a similar experience with an old running injury. I’ve done a lot of chemo and don’t regret it. It has extended my life and I’m hoping to extend it long enough for a new treatment to become available.

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That was another thought I had, even if it does come back, maybe chemo would delay it and it’s more likely there would be an alternative treatment for it

Same with me too. Had a pain on my foot for the longest years and finally MRI revealed SS. Did amputation below the knee. At that time I had no Mets and regardless did Chemo. It returned after two years, on the amputated stump and also few nodules in my lungs. Did chemo again and they are now stable. I would have regretted not doing chemo when I was initially diagnosed. But I am sure chemo delays the growth from my personal experience. I still have the bad guys in me but they are all stable and hoping for it to remain stable for a longer time. Chemo isn’t easy but you can easily get over it. Just have to take it one at a time and not stress a lot about it’s side effects. More important than the side effects it’s to live longer so that more treatment options are available :blush:

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Sometimes I am unsure whether to answer peoples posts because mine was so long ago and everything seems so different.
Anyhow I had kind of the same problem pain, leg giving out on me etc. I went to 3 different docs and after scans I was told it was all in my head, I knew it wasn’t. Finally a doc said they missed a spot on the CT scan but it was just a calcium deposit. I said I wanted it out. They did but they also spread it. I ended up at Shands in FL. They did a radical resection, rearranged their machines to be able to give me 31 consecutive radiations and I was supposed to get a year of chemo. I don’t even know if they use these drugs anymore. I had adriamycin, V-16 and cytoxan all by IV. They took me off early because of it messing with my heart. It has NEVER come back. I do have a lot of other problems because of the chemo, like my femur breaking in a couple of spots and on a permanent crutch for life, my body on the inside, according to docs is aging faster than it should but you can’t tell it by looking at me.
I do not regret having the chemo, I don’t think I would be here otherwise.

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Thank you for your response, I’m glad things are stable for you and hope it stays that way for a very long time. I think I will likely go ahead with the chemo so that I know I’ve done everything I can to prevent it coming back.

Thank you for the response, I’m so glad it worked out for you and that you’re still here to share your story

May I know how big your tumor was and what grade

Hayley, a belated welcome to you! I’m sorry to hear about your diagnosis and the dilemma it has dealt you, but I’m also very happy that you found us. When you get a chance, please read about our non-profit, our history and our mission here.

As you can see, the people here are understanding and helpful, and there’s nothing like talking to someone that has “been there, done that”, is there?

All the best to you, from all of us at Ben’s Friends.

Seenie from the Moderator Support Team