Fibromyxoid Sarcoma

izzyboo said:

Fibromyxoid Sarcoma
Hi.
I was diagnosed in Dec 09 with this sarcoma after removal of my 5th lump in Oct 08. They did not realise what it was before. It is low-grade and the only problem I have is from pain from scar tissue. I dont feel any different apart from that, and I suppose because I am still here (my 1st was removed at age 13 & I am now 51)there doesn't seem to be any reason to think I wont still be here for years to come.I know I have a good team looking after me now.

JVigil9 said:

Fibromyxoid Sarcoma
I also had a lump that I watched for close to 7 years on my right thigh. Numerous doctors over the years told me not to worry about it, because it did not appear to be moving & was not causing me any pain. I finally found a doctor who felt it was important to refer me to a surgeon to have it removed & tested. They removed a lump the size of a golf ball along with a radius of muscle surrounding it. The tests results showed that it was Fibromyxoid Sarcoma. My first appointment at the Cancer Center is on Friday, so I'm not sure what's going to happen yet. I'm only 24 years old. It's been hard to find information for this particular type of cancer & most of the search results I've found are written in medical terms I do not understand.

constantiak said:

Fibromyxoid sarcoma
I also had a lump on my left wrist. I get it off and went to the doctor. After a lot of examinations (MRI, CT etc) it seems that now my wrist is clear. Doctor says that in order to be sure that this lump will never come back we sjould have another surgery to cut one more cm from my wrist instead of radiation. I am very afraid that in this second surgery my hand may not wotk properly. But the better I should do is to listen to my doctor.

As I have already read, this sarcoma may never reappear, Bu who knows.....

Thanks

constantiak said:

Fibromyxoid sarcoma
I also had a lump on my left wrist. I get it off and went to the doctor. After a lot of examinations (MRI, CT etc) it seems that now my wrist is clear. Doctor says that in order to be sure that this lump will never come back we sjould have another surgery to cut one more cm from my wrist instead of radiation. I am very afraid that in this second surgery my hand may not wotk properly. But the better I should do is to listen to my doctor.

As I have already read, this sarcoma may never reappear, Bu who knows.....

Thanks

Dermarac said:

Hi constantiak,
I Read your post & just recently joined CSN, I just read your story and hopefully am able to provide w/ some insight w/ my experience. I initially had a CT Chest Scan due to some chest / neck arm pain I was having, related to tendonitis in my right arm, causing me some discomfort. The Doc was concerned that I had pain in the Pectoral muscle related to this & had a scan ordered, JUST to rule out a possible embolism or blockage (based on age & family history of heart disease. We did the scan with Iodine & had follow on stress & blood tests all showing I was perfectly healthy. The CT Scan did show that I had Tumor Behind the right lung which measured 3Cm x 4Cm x 7Cm. It was causing me some pain in that area, but only thought it was a muscle knot related to work outs & this tendonitis thing I was seeking physical therapy for. The Dr. initially thought this was benign, due to it's distinct borders & shape which would suggest it's benign. I had a follow on PET/CT Scan, which also showed that there was very little to no activity within the Tumor itself. Follow on discussions with a Cardio-Thorasic Surgeon (Excellent Surgeon by the way) suggested a conservative approach, let's remove it & see. A second opinion from a Major Boston Hospital said we can remove it but they were also ok w/ a wait & see. My dad died in 2009 from an aggressive form of GI Carcinoma Cancer, so I was not thrilled w/ the idea of "leaving it in" and a wait & see approach! Had it removed in Dec. 2010 expecting the results to show it was benign schwannoma type tumor & the pathologist at the hospital I had the operation called it that but my Surgeon saw things on the slide sections that didnt make sense so it was sent into boston for follow on analysis. Wouldnt you know, it was a Fibromyoxid Sarcoma! This is a very rare cancer but even rarer where it happened to be located in my intercostal lining. Because the original thought was that this was benign, it was removed with absolutely no margins. The Surgeon also indicated that it was perfectly in tact and simply popped out on its own & was pulled thru the chest wall in a sac. In Literature related to this & many other cancers, Doctors prefer a 2cm Circumfrential margin of removal if possible. In my case there were no margins, it would have to involve lung, chest wall & rib removal. The initial Radiologist Recommendation was to perform High dose targeted radiation (similar to this cyber knife thing they talk about on TV) to deal with the margin Issue but there are risks associated with this as well. I was then referred to a New State of the art Sarcoma Treatment Center here in Boston at the Dana Farber Cancer Insititute. All (3) Doctors there who reviewed my case said hold off & let's wait & see. Because this is such a low grade / slow growing cancer & follow on surgery would involve rib & chest removal, it would be better to see where the cancer will re-occur (if it ever does), then determine the coure of treatment to defeat the cancer in those localized re-occurences with either Surgery, targeted radition or new treatments that are under research & trials. I feel very lucky to now be working with DFCI on this. They are performing both research on Sarcoma Cancers & providing the latest approved treatments for this cancer. Since my operation, I have had (3) CT scans with no re-occurence & the surgical areas are healing up nicely. Right now I am being scanned every 90 daye (very aggressive) to look for re-occurence. After September this year it may be cut back to every 4 months & eventually 6 months, then 1 year. For me, this was the best approach considering the alternatives. I am very nervous this thing may have metastitised & headed for the lungs or liver but with the monitoring, this will be detected if it did, I have my fingers & toes crossed! Pls. contact me if you want more information about DFCI, you may want to consider seeking second opinions on this cancer before going under the knife again or considering the high dose raditaion. It's bad enough were being exposed to all the radiation from body level CT Scans! I wish MRIs could be used instead!

Len66 said:

LGFMS - recent diagnosis
I had a small lump in my lower back, on the left side, for a few years. Every doctor that saw it told me it was nothing to worry about, probably just a fatty cyst, etc. My wife noticed this past year that it seemed to be getting larger. It was also starting to irritate me and "poke" me whenever I would lie on my back or sit back in a chair. Point of note: I'm a 46-years-old USMC veteran who has been forced to use the Veterans' Affairs medical system for the past 4 years because I was laid off from a job with great benefits and since then I haven't been able to afford health insurance.
Anyhow, this past summer I saw my primary doctor at the local VA clinic and told him that I wanted to have the lump removed regardless of what he thought. So in September of this year I saw a surgeon at the VA hospital who looked at it for 30 seconds and said it was an epidermal cyst that should be removed and I should not have waited so long. Go figure. On October 18 I went in for same-day surgery (local anesthetic only - I was awake the entire time) and the lump was removed. I saw it when it was taken out. It was about the size of a large marble and was in its own little sac. Of course, it was sent off to pathology as they do this for anything removed from the body (thankfully).
Yesterday I received a call from the surgeon. He wanted me to make an appointment to discuss the results of the pathology report. As I live a considerable distance from the VA hospital, I asked if we could just talk right then. He then told me that the lump was a low grade fibromyxoid sarcoma "with areas of intermediate grade tumor progression." He didn't tell me the exact measurements (I didn't ask). He said that he wanted to schedule surgery again to get a 2cm margin - of course he didn't do this in the first place - and that I would have to follow up with an oncologist for long-term cancer care, including CT and/or PET scans (I can't do MRI because I have a cardiac pacemaker).
I have been searching for and reading articles on this type of tumor in several medical journals since yesterday. As I have a degree in biology I understand most of the language in the articles. I do apologize that we scientists tend to write in a way that is difficult for non-scientists to understand. It used to be that scientific journals were mostly read by those in the field, but with everyone being able to access them on the Internet these days we should realize this and do a better job of using language - or at least interpreting our own language in the articles - so that people who feel the need to research their own issues can understand things.
Anyhow (sorry to get off on a tangent), reading the articles on this tumor has caused me to be concerned especially because of the likelihood for delayed metastasis and that, if it does happen, it usually occurs in the lungs. I'm concerned now that it may have metastacized already because I have had two of the symptoms of lung cancer over the past few years - persistent cough and change in voice (not in my speaking voice but in my singing voice). Additionally, I've had this small raised area just to the right of my Adam's apple that my primary doctor and the VA hospital's ENT both said is a "carotid bump," whatever that is. Also, in the past couple of years I have been receiving information about a survey of people who lived on or around the Camp Lejeune Marine Corps base in the 1980's (when I was stationed there). It turns out that they were dumping toxic chemicals into the ground for many years and that these chemicals ended up in the water supply. In my initial survey I said that I had not received a cancer diagnosis but now that I have had this tumor I will, of course, contact the survey company and modify my responses. More importantly, however, is my greater concern that my exposure to toxins may have led to the development of this tumor and may lead to more occurrences. What if the supposed "carotid bump" is another LGFMS?
I am still trying to decide how to proceed with all of this. It's been just over 24 hours since I found out that my epidermal cyst was in fact a cancerous tumor so I know it's a lot to consider in such a short time. I'm afraid of being cut open again and wondering if I should just take a "wait and see" approach to any more surgery. I'm encouraged by what I've seen in this thread but I also have to consider some of the information from the medical journals that I've read. I'd like to do at least an initial series of scans to find out if there is anything else lurking inside of me. I also can't help but obsess about all the odd aches and pains that seem to appear and disappear without warning and wonder if I might be full of cancer.

My husband just had a lump removed from his arm.  The FNA had been inconclusive and they recommended surgery.  Surgery was last wednesday 9/11 and they just came back with full pathology report yesterday that it was a low grade fibromyxoid sarcoma.  Follow up visit on October 2, no radiation for now, but they're going to do a full body MRI and then again in 3 months.  (For how long he needs to continue to get the MRI's, I'm not sure).  I've also been reading all the medical journals online and the high recurrence rate and possibility for metastasis has been freaking me out.  Would anyone mind sharing how they're doing now?  I'm hoping since no one has reposted, everyone has had no other issues after surgery.