Fibromyxoid Sarcoma

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.

What has happened since your last post? My husband has this and it has metastisized to other areas. Not alot of info on this,

tngrimes said:

4 Years Clear

I was 16 when I was diagnosed with fibromyxoid sarcoma. I went in for a simple sports physical and ended up seeing a children's oncologist in no time for a lump the size of my fist on the back of my thigh. I ended up at The James in the OSU Medical Center where I underwent 3 surgeries within 3 months. Since my third/last surgery I've gone from MRI's CT's and chest x-rays every 4 months, to every 6 months, and now annual. For the first couple years I couldn't even hear the word cancer let alone speak of it to anybody without breaking out in tears, now I just passed my 4 year anniversary cancer free and my tattoos and I tell my story every day.

Keep up hope, and hopefully my story will replace some concern with hope, too. 

Just breathe, God's got a blessing to spare ♡

Thank you for sharing this.

tngrimes said:

4 Years Clear

I was 16 when I was diagnosed with fibromyxoid sarcoma. I went in for a simple sports physical and ended up seeing a children's oncologist in no time for a lump the size of my fist on the back of my thigh. I ended up at The James in the OSU Medical Center where I underwent 3 surgeries within 3 months. Since my third/last surgery I've gone from MRI's CT's and chest x-rays every 4 months, to every 6 months, and now annual. For the first couple years I couldn't even hear the word cancer let alone speak of it to anybody without breaking out in tears, now I just passed my 4 year anniversary cancer free and my tattoos and I tell my story every day.

Keep up hope, and hopefully my story will replace some concern with hope, too. 

Just breathe, God's got a blessing to spare ♡

Hi, I am new to this site, but was dx with low grade Fibromyxiod sarcoma.  I had my first 2 surg. at a local surg. office.....then had my 3rd surgery at The James!!! I am going on 8 yrs cancer free. I love that place. Lol....I can't remember my newest Dr. name I think I'm on number 4 .... but my NP is Lisa Binzel... she has been with me the whole time. I started out going every 6 months for a chest xray for 5 yrs but am now on yearly f/u's. I saw Dr. Kraybill until he retired. and my first surgeon died 6 months after he did my surgery... that was Dr. Walker. Good luck in your fight against this cancer

Hi cyndihase@yahoo.com, 2008 I was diagnosed with Fibromyxoid Sarcoma in my left wrist (I was 45 at the time), I had gone in for carpal tunnel surgery and the surgeon noticed some odd tissue and thankfully sent it out for additional testing.

I had had the lump on my wrist for at least 10+ years and it had continues to grow slowly. The first diagnosis was a nerve bundle formed after a wrist fracture, then it was carpal tunnel and that's when they dfound it.

I had 3 operations removing most of 1 large muscle in my forearm and muscles all the way up to the center of my palm.

Did Radiation and everything looked good for awhile.

The lump has started to grow again but according to MRI's it doesn't appear to be the sarcoma coming back. I have also been quoted the 10% relapse info but so far so good. Stay strong.

Daniel

I was diagnosised in 2015 after surgery to remove a nodule from my left upper neck region.   I was referrred to MD Anderson in Houston, TX at that time.  It was recommended that I follow up with a CT scan of the neck region and the chest every 6 months.   I had two scans that were fine.   My last in November of 2016 showed a recurrance in the area.    My local ENT referred me back to MD Anderson for surgery to remove the nodules.   I am one week post surgery.   The plan is for me to have 4 to 6 weeks of radiation therapy once healed.    My question is has anyone had radiation therapy and what were some of the side effects.  

murphy43 said:

Fibromyoxid sarcoma

I was diagnosed in June 2004 had my it removed in July of 2004. Since then I haven't had a reoccurrence. I was 8 years old at the time I am now 21 I go to MD Anderson every 2 years for blood work and x-rays and have yet to have any signs of reoccurrence. The only problem I had was my surgery site got infected and created an indention in my chest all i have now are just scar tissue pain and I developed headaches after my surgerys. I had it on my ribs and they took half of 2 of my ribs it took 2 surgerys. I have been worried about a reoccurrence for a while now but I am in a case study at MD Anderson now. It seems if they get all the cancer cells which they told me that there is a better chance to keep it from reoccuring. I never had memo or radiation.. Just stay strong I hope this helps someone. I haven't ever found anybody with the same cancer that I had. I just want to give you guys my story. Hopefully it gives you all a lift to not give up.

Is this case study specific to Fibromyoxid Sarcoma?  My son has the same thing and his tumor was removed from his arm. So far so good with no reoccurrence but I was interested to see you talk about a case study so I was interested. THanks in advance. 

I was dx in January with a ossifying myxoid malignant tumor in my left foot. The tumor grew for years, based on my symptoms.  I had a tumor in the same location removed in 2009, it was benign.  Since January of this year, I've undergone radiation, had a surgery to remove cancerous lymph nodes in my thigh, had an amputation of my left foot, and am now waiting to have a biopsy because my latest PET scan showed a spot on my lung.  Has anyone experienced anything similar?  If it has indeed moved to the lung, I just want to know what to expect.  Thank you.

amberly11 said:

Radiation

Hi LeonaBrannon! Did you have any radiation or chemo? I've recently been diagnosed with LGFMS and it looks like it will be hard to get clear margins due to the fact that my tumor is so close to my femoral artery. They are suggesting possible radiation prior to surgery to shrink the tumor. I know that this will increase my likliehood of a second cancer and am reluctant to do it. What is your experience with other treatments besides surgery?

 

Thanks so much for sharing your story!
Amberly

Hi Amberly, 

Did you end up going forward with radiation? My father just recently finished a round of radiation for his low-grade fibromyxoid sarcoma. After 1 month of finishing radiation, he has seen some slight shrinkage. Specifically replying to you as it sounds like your tumor is also close to a vital artery making surgery difficult to do (my dad's is in his neck but by a vital atery as well so surgery is nearly impossible). Curious what you did to treat. 

Thank you! 

I am hoping if targeted therapy will be one of the available treatment for fibromyxoid sarcoma.  Please share if anyone has experience with this?  Thanks.

Hi,

I just got diagnosed with a low grade fybromyxoid sarcoma last week and am still in shock. I'm 36 and have had a lump on my foot for over 17 years and was always told it was benign. I'm also from New Zealand, and with it being so rare, dont know anyone else with it here.

I've been told the prognosis is good. I'm having a CT scan and MRI next week and they said they expect it to just be in my foot and surgery will remove it all, hopefully without needing radiation. I'm still scared though that it has matastisised to my lungs or other parts of my body. With two small kids this is really stressful.

I am also scared at the high reoccurance rate but trying to stay positive. Any good resources would be appreciated, and it's nice to meet others on here.