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Question about Fibrosarcoma

JoeyMN
Posts: 2
Joined: Oct 2009

I found out in 2007 that I had soft tissue sarcoma in shoulder area. I went through chemo and then had the tumor (high grade) removed from my shoulder area. Then i went through radiation. One year after being "clean" i had a CT scan and they found nodes in my lungs. I was told at that time I could die in 3 months to a year. Or at least %50 of people in my situation die in that time. Its been one year this month and have been doing chemo for a year now. The current treatment seems to be keeping the 5 cells from growing.

My question is, is there anyone here who has had this type of cancer? And if so what type of treatments did you take? I would like to live to see my kids grow old and I am wondering if i have other options other than what my doctor is telling me.

Any help or even disscussion would be greatly appricitated!!!!

Thanks

FYI - 40 yr old male here

howell58
Posts: 12
Joined: Apr 2009

Hello. Read your story today. I am so sorry to hear that you are struggling thru this.
My husband was operated on two years ago for what they believed to be kidney cancer because it was attached to the kidney. He had the kidney removed, and we were told they didn't know what type of cancer it was. Turns out they didn't even get it all so we were referred to Sloan Kettering in NY to see a sarcoma specialist.
Last year he had a spot removed from his lung, which they believe to be a mestastisis.
The doctor there has been watching the spot that was leftover from 2 yrs ago as they believed what was left to be non-agressive. Well, it has just grown 1 cm since June so he is having surgery again on the 16th of Nov. We are scared to death, this is called a retroperitoneal sarcoma and grows in fatty tissue. It has a high recurrence rate and comes back with a vengeance when it does, on avg. every 2 yrs. Everything I have read on my own about this particular sarcoma says that the best prognosis is to get it all out the first time. Well, they didn't happen, so prognosis is worse. Chemo doesn't work on it and radiation would damage vital organs in abdoninal area, so surgery after surgery is only recourse. Another reason why prognosis is not good because surgery complications, etc. We are 47 yrs old and have two children, 15 and 12. It has been devestating and I for one have had to live our lives differently always on my mind "never know whats going to happen tomorrow." Sloan Kettering is supposed to be one of the top cancer centers in the country. Where do you live?
I wish only the best for you and your family.
Sue

sdmama
Posts: 5
Joined: Nov 2009

I have fibrosarcoma. I noticed a strange bump in my right thigh shortly after I had my baby. I didn't think too much of it at first, but a few months after I noticed it, I got it checked out. Within 2 hours of getting my MRI, I was scheduled with the orthopedists office. The orthopedic oncologist removed my tumor and the muscle it was in last month. Staging scans showed that it had not spread anywhere. I am starting radiation this week. My doctors are hopeful that the surgery and radiation should be an effective treatment. I am not going to be having chemo. I have noticed a lot of people on this board have had chemo to treat sarcomas, so I want to find out a little more about that. I was told that chemo is not effective in my situation. I'm not sure if it is because my tumor was low grade or because of the type of tumor it was. After radiation I will be having CT scans every three months for the next few years.

I am sorry that you are having to deal with this again. I know how you feel about wanting to know more people with fibrosarcoma to understand it better. I read a pamphlet about sarcomas and it said that 1% of adults with cancer get sarcomas. I have no idea what the number would be on fibrosarcomas. I hope that your treatment goes well and that you are able to find more options for treatment. Sending lots of positive thoughts to you and your family!

Chez
Posts: 23
Joined: Nov 2009

Hi sdmama
I have been following your comments as I seam to be at the same stage of treatment as you. I notice your sarcoma was in the thigh. Mine in the arm. I had 2 surgerical procedures to make sure all was removed and that the margins were clear. I too was told chem was overkill for this according to recent research. I too just had radiaion. Good luck.

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