Diagnosed with sarcoma? Let's share

I had a high grade pleomorphic sarcoma with myxoid area on my hip. It was treated with 25 radiation treatments followed by surgery. The tumor was removed. It was 97% dead when removed.
However, now the myxofibrosarcoma has returned in my lungs. Waiting to find out treatment options. Any suggestions as I was told it doesn't respond well to chemo.

@carolak
Hi Carolak....I'm not sure what the Dr at Moffett's specialty is, but to assume things without testing isn't very reassuring. A biopsy will provide detailed information about what your growth actually is, and can provide needed guidance on a treatment plan. By doing surgery first without any other knowledge of what you're dealing with, it may cause you to miss important treatment steps. Is the Moffett Dr a sarcoma specialist, or sarcoma surgeon? He should have this specialty to actually help you. If not, you should go to a sarcoma specialist or clinic for better guidance. As you are a breast cancer survivor, you need all the details you can get on this new growth. Wishing you well in your journey and the time ahead.

@hjemma
Hi I've had MRI and ultrasound. I went to a regular surgeon and an orthopedic surgeon each said they did not want to touch it and sent me to Moffit cancer center in Tampa. That Dr looked at pics and told me a soft tissue sarcoma and to have surgery. Said it was probably on a nerve and that causing pain. Said it would not go away He is Also the dr who said probably not cancer because it hurts. Did not offer to do a biopsy .. and sadly I didn't think or ask about a biopsy. He did say they would test it . That's as far as I've gotten Thank you for response.. and no chest or other X-rays or scans on body

@hjemma
Hi I've had MRI and ultrasound. I went to a regular surgeon and an orthopedic surgeon each said they did not want to touch it and sent me to Moffit cancer center in Tampa. That Dr looked at pics and told me a soft tissue sarcoma and to have surgery. Said it was probably on a nerve and that causing pain. Said it would not go away He is Also the dr who said probably not cancer because it hurts. Did not offer to do a biopsy .. and sadly I didn't think or ask about a biopsy. He did say they would test it . That's as far as I've gotten Thank you for response.. and no chest or other X-rays or scans on body

@carolak Have you had a diagnostic ultrasound or other imaging? Also a scan of lungs to make sure it did not spread?

@hjemma
Oh my gosh sounds a lot like mine. Had some pains in my thigh several months ago( on and off). Then found a marble size lump and it started hurting more. Kind of achey but really hurt if I bumped it or touched it. I guess if it's something that has to come out they will do a "test " to see if cancer or not. I will have it taken out and guess see what the results show and hopefully not cancer. But it sounds so so much like my symptoms. Prayers for you

@carolak please send sarcoma specialist at a sarcoma center ( one that handles more than 200 sarcoma cases per year). A good one in ohio is Cleveland Clinic in Cleveland bor the James center in Columbus (ohio state). Good luck, at getting some competent advice

@carolak
The biopsy determined the type of soft tissue tumor -- synovial. It is rare. It presented as a small, now marble size, lump in my thigh. It's firm like a gum drop. It sits near or on a nerve. Have yours checked more. Since it is rare, your primary doctor may not recognize it.
I will have surgery after the 15 Proton Beam treatments.
I can walk and work.
Bumping the tumor hurts the most, but it can be a sharp pain just lying in bed.