I am new to this site, and have been diag. with fibromyxoid sarcoma in my shoulder.  I am not seeing anything about sarcomas at all in the site.  I have just started a 25 day radiation regime, before surgery. I do not know what to expect, and am very concerned about loss of use of my arm or shoulder.  They told me the worse case would be shoulder and arm amputation, this scares the **** out of me.  I understand that it is very rare, but is there anyone that could share something.

Hi there - I, too, am new to this site, and was hoping for more information about sarcoma.  My husband was diagnosed with liposarcoma in December of 2006.  He went through several months of radiation, followed that up with surgery to remove the tumor (his was behind his knee), and then they said that he could have chemo, but with a kidney disease that he had, they decided to wait.  We had 3-month checks (ct scans) and found that the cancer had metastasized to the lungs in October.  Now we are waiting to decided on what chemotherapy treatment to follow.  Apparently M D Anderson in Houston has had some luck with some current research.  Do you have an specific questions that I could maybe help with?  I don't know a lot, but I know some.  I have totally taken on the role of information finder/keeper so my husband doesn't have to worry about it.  And I know what you mean.  This stuff scares the **** out of me, too, but I do think that they are able to do some miraculous stuff these days.

Hello.  I'm new to this site as well.  Last year, I was diagnosed with a desmoid tumor in the left inguinal area (left side of the groin), which is supposed to be benign.  After a surgical removal of the desmoid tumor, I was told to get ct scans every three months.  Wondering if this many ct scans was good, I went to another doctor, hoping for a second opinion, and the doctor tells me that this was in fact a fibromyxoid sarcoma.  At the moment, I'm scheduled for another ct and mri scan to make sure the sarcoma has not spread to the lungs.  He did not mention anything about chemo or radiation.  Would you happen to know if such treatments are likely to be used if it turns out the sarcoma has metastasized?  Thank you.

Hey - I don't know about your type of sarcoma, but I feel like an expert on being a Frustrated Supporter...  With my husband's sarcoma, he was told that if the cancer had metastasized to the lungs, then it would be a Stage 4 cancer, and chemotherapy would definitely be administered.  That is where we are at now.  He will start chemo in a couple of weeks.  We have been very frustrated with getting answers from doctors as we've gone through this.  Because this type of cancer is rare, many doctors are sure what treatment is protocol and what is new out there.  We started with the Midwest Sarcoma Institute here in Kansas, with Dr. Howard Rosenthal.  By all accounts, he is one of the leading experts in sarcoma in the nation.  From there, we have worked with a general oncologist who is consulting with doctors and pathologists at M D Anderson in Houston.  The problem has been in coordinating the transfer of information.  I could go on and on about that.  You should ask if the margins of the tumor they removed were clear.  If so, that is a good sign.  It seems strange that one doctor told you it was sarcoma and the other didn't.  My husband's was diagnosed immediately after a biopsy.  He had 28 rounds of radiation, followed by surgery, and now 8 months later is going to start chemotherapy.  Let me know if you have more questions or if you just need to vent a bit.

I am back.  Have 20 of my 25 radiation treatments down.  So far not too much fatigue, I am able to function.  Going to have lungs and tumor MRI'd on Valentines day, and also meeting with the surgeon that day.  Will get the schedule for surgery at that time.  I do not have any results on the radiation at this time, but will post as soon as I know something. Thanks to those of you who have responded, your stories are wanted.

Good luck to you as you finish up your radiation.  I will send prayers your way for a good result on your mri. My husband started his chemotherapy today.  He is feeling well right now.  He is taking Gemzar and will take a dose of Taxotere (sp?) starting next week.  They say it can be hard on people.  We are hoping for the best!

 

 If you could tell me what the tumor felt like and if there was more than one lump. I have many lumps under my knee area and the side of my left thigh is very painful. I also have knots and areas that are very sore to the touch.  I'm going to the doctor's Wed. for surgery on my leg but i'm finding other knots in my rib cage too. I'm 44 years old and i had thyroid cancer last year. The knots are right under the skin, like this one you can more and does not hurt, it's about the size a dime. If you could please tell me how he found he's and what they felt like ect. Thank you, Paula my email plovehugsme@cfl.rr.com please write me ... God bless you and yours...

 

I am back.  Finished the 25 radiation treatments.  Got a MRI and CAT scan on Thursday.  The radiation had little effect on the tumor, but the CAT showed no mets., thank GOD.  Surgery is scheduled for the 27th with brachey radiation to follow if we get final approval from all concerned parities..  Because of the location, they don't think that they can get good margins, so we are going to try brachey before any amputation of the arm or shoulder.  There was some discussion of going to Mass Geneal in Boston, but my surgeon came from there and the radiologist also has had experience with brachey, so I am staying here.

 Primary peritoneal carcinoma sarcoma!!!  Help!!  Need any information on this diagnosis that anyone can offer.  I am 70 years old and have had surgery to remove huge tumor along with a partial hysterectomy.  Currently having chemo treatments with taxol and carboplatin.  Information on this kind of cancer is hard to locate.  Would appreciate all response to this request.  Thank you, Barbara