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Soft Tissue Sarcoma Treatment

Posts: 1
Joined: Jun 2004

My mom was diagnosed in Feb. w/Soft tissue sarcoma (specifically PNET). The tumor is primarily involving the gluteus medius muscle. The tumor has displaced the gluteus maximus posteriorly and it may also involve the gluteus minimus and pyriformis muscles to a lesser extent. What does all this mean? Well, she has a softball between the muscles on her left rear cheek. Yes, it is, quite literally, a pain in the a**. (Must be humorous!) It hasn't responded to chemo (two "cocktails" so far) nor radiation. We're taking her to Sloan-Kettering (she's at Menorah in K.C. and we love them, but want alternatives, if there are any) for another point of view and other possible treatment options, if there are any. This is rare, only about 1% of cancers, especially adults (it's a form of Ewing's; but they call it PNET). It's also metastasized to one lung (one small tumor there) which has also grown. We feel like we're nearing the end of a road we never thought we'd be down. My sister and I try so hard to be positive, but honestly, we don't see much hope sometimes. We'd never say that to her, but we feel it. Does anyone know anyone who's had similar cancer and who's beaten it?
Thanks for any help! :)

Mike99's picture
Posts: 22
Joined: Mar 2003

My name is Michael and I am Known in the chatroom as Mike99. I have survived a Lyposarcoma (soft tissue tumor) in the right posterior thigh. If you wish to contact me you can leave a message on my web page or try to catch up with me in the chatroom. I am praying for your mother and I can tell you that even if the odds are against you it can be beaten. I was not given much of a chance and here I am almost 6 yrears from my initial diagnosis. Please feel free to contact me and we can go over what treatments I had and what I experienced. God Bless you and your family and I look forward to speaking with you.

Posts: 1561
Joined: May 2006

I had similar 2 years ago. Never heard it called anything specific. Just undifferentiated soft tissue sarcoma. Similar spot. Pyriformis muscle. Had some nerve involvment in the lumbarsacral plexus as well. Been in remission about 16 months from that. I had a standard pediatric Ewing's protocol as I was 17 at the time. Hope this helps.

choctaw1951's picture
Posts: 2
Joined: Sep 2004

well my dr.has not learned of this cancer yet.Lol. she still treating me with p.t. on my legs and back. but i just learned of this cancer this week, i guess im ahead of my dr's( lol)but i knew that there was something wrong awhile back, the sore that's at the end of my tail bone won't go away.it never completely heals so i started reading about cancer hear, and this fills the bill perfectly. Just wish the Dr's would learn as much as i have. that's why they all say that they are "partacing medicane" i guess.Lol any help would be very welcome, im choctaw1951@csn on this web site or HoustonMoss@msn.com many thanks to all

Posts: 1
Joined: Oct 2004

It has been nearly a month since your posting. However, I noticed that you are going to a doctor at Menorah in KC. 3 years ago I was diagnosed with fibrosarcoma, a type of soft tissue sarcome. There is a wonderful doctor at Menorah. His name is Howard Rosenthal. He is in Suite 308. He and his nurse Kim are wonderful people. THeir office is called teh Midwest Sarcoma Institute. That is all he deals with are types of sarcomas. Give them a call. The number is 9136961020. I hope this will help. God Bless

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