Fibromyxoid Sarcoma

CarlyLackey

christinenz said:

I'm new here

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. 

Hi Christine, I was diagnosed

Hi Christine, I was diagnosed with the same thing in my lower leg almost a week apart from you. I have had surgery to remove it and nerve reconstruction that all went well. Hoping everything went well for you too and that the other scans were clean. Seems like the one positive from this type of sarcoma is the slow growth, but still scary. Hoping for the best for you, we’re in this together sending positive vibes from Southern California 

kristenlys

How to Not Panic?

Hi There,

My husband had surgery to remove about an 8cm Fibromixoid Sarcoma mass deep in his thigh last March. The pathology after surgery showed negative/clear margins. He’s spent most of the last year trying to get used to the new normal with a leg that no longer has the same range of motion as before surgery and holding our breath every 3 months when he has a Chest XRay and MRI. Where I need some advice is in how to deal with the panic that he feels every time anything hurts, aches or he just feels something off. He’s an almost 40 year old man, he’s going to have some ‘creaks’ and aches from time to time. I would love any advice or guidance - I want to be supportive and I don’t want him not getting checked out. How do you not live in constant fear?

 

Thanks,

Kristen

amberly11

cs2426 said:

Hi 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! 

radiation

Hi CS,

I did go forward with the radiation. I had 25 rounds of "low dose" radiation and the tumor did shrink slightly. They got clear margins during surgery. They originally thought the tumor was 5.5cm but upon extraction, measured it at 8cm. I just had an MRI this morning and am still NED! I hope all is good with your Dad. 

amberly11

kristenlys said:

How to Not Panic?

Hi There,

My husband had surgery to remove about an 8cm Fibromixoid Sarcoma mass deep in his thigh last March. The pathology after surgery showed negative/clear margins. He’s spent most of the last year trying to get used to the new normal with a leg that no longer has the same range of motion as before surgery and holding our breath every 3 months when he has a Chest XRay and MRI. Where I need some advice is in how to deal with the panic that he feels every time anything hurts, aches or he just feels something off. He’s an almost 40 year old man, he’s going to have some ‘creaks’ and aches from time to time. I would love any advice or guidance - I want to be supportive and I don’t want him not getting checked out. How do you not live in constant fear?

 

Thanks,

Kristen

How to Not Panic!

Hi Kristen!

I also had an 8cm tumor removed from my left thigh. They removed the majority of my left psoas (hip flexor) muscle and I do have a different range of motion, now. But it's not too limited. I can't do boat pose in yoga but ya know what. I still teach yoga! This all took place in September of 2015 and I just had a follow up MRI this morning with GREAT results. No evidence of recurrence! I am 38 years old and have to small boys (ages 7 & 9). 

I think scanxiety is a natural part of life for any cancer survivor. It does get better but sometimes it still comes on full force. I do a lot of yoga, I read a lot of esoteric/self-help stuff, I go to a therapist, and i park it on the couch when I feel overwhelmed. It also helps to have faith in something bigger, even if it's just faith in your destiny. At the end of the day, we all have a journey that we're on and when it's our day, it's our day. I try to take care of this precious body as much as I can so that I can feel my best while I'm here and trust that the universe has my back. I hope that's not too woo woo for you. I hope that it helps a little. Sending you all the good vibes!!

Amberly

 

CarlyLackey

Facebook Group

Hi everyone,

As we all know this is a rare form of cancer and it's tough to find information or others that have had similar experiences. A girl from Australia started a facebook group and over the past few days people are joining and sharing their stories.

If you have a facebook, it will be another cool way to create some community around this. Here is the link: https://www.facebook.com/groups/1604587856362623/?ref=share

WorriedMomma

heatham said:

Fibromyxoid Sarcoma
Nitram, How did your radiation went. I hope successful. My 14 year old daughter was diagnosed with Fybromyxoid Sarcoma in Dec 2012 and has done 3 surgeries. She is schedule to do radiation and chemotherapy as the disease appear to be in the nodes. I am so scared and concern. Let me know how you are doing

14 year old son LGFMS

Hi heatham...I pray you and your daughter are well.  My son was 13 years old when he was diagnosed with 2 low grade fibromyxoid sarcoma tumors in his upper left thigh.  The entire process has been frightening.  I am hoping you might update me on how your daughter is doing and share any advice regarding this type of sarcoma.

WorriedMomma

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.

14 year old son LGFMS

Hi Len66...just checking to see how you are currently doing.  I am new to this forum.  My 14 year old son was diagnosed last September at age 13 with 2 LGFMS tumors in his upper left thigh.  He had a massive surgery with vascular reconstruction December 2019.  Just trying to gather as much as possible regarding recurrence that anyone with this sarcoma has faced.  He had 2 tumors in close proximity (but not connected) to one another upon initial diagnosis.  Any help you can offer would be appreciated.

WorriedMomma

sandysarcoma said:

Don't lose hope!

I was 50 when they found mine. I am still here...please don't listen to "statistics"..you make the statistics...I make them...and I am still here, dispite Stage IV cancer, surgery, chemo, radiation, more surgery, more chemo and mistakes by doctors.... I was sure I wouldn't live to see my youngest get married, but here I am...still alive and kicking!

 

Love you! 

 

Sandy in Califorrnia

714 788 0894 if you ever need to talk.

14 year old son LGFMS

Hi Sandy...would you be willing to share if it was LGFMS that you had been diagnosed with?  If so, how have you been?

 

 

WorriedMomma

LeonaBrannon said:

LGFMS

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

 

14 year old son LGFMS

Hi LeonaBrannon...Just checking to see if all is well.  Seeking out survivors of LGFMS because my son was diagnosed in 2019.

WorriedMomma

beriberi1111111 said:

Low grade fibromyxoid sarcoma

My now 11 year old daughter had this sarcoma removed from her collarbone when she was 8 years old. At first they believed it to be a fatty tumor but at excision discovered it was not what they thought. After the pathology returned we found out this was what she had. She has had full body pet scan completed and showed no other lumps. Since then we return to Valley Childrens every 6 months for chest xrays and excision site check. She has not had anything pop up yet until today. I got a call from the Nurse at 6th grade camp stating that they found a lump behind her ear. We will be on our way back to Valley Childrens as soon as she steps off the bus from camp. Will try to keep you posted....and I pray this is nothing! After all of the research and advocatiing that I have done it seems that this "**** Lump" which is our nickname for it can occur up to 5 decades after diagnosis.

14 year old son LGFMS

Hi beriberi1111111...I am inquiring about your daughter.  I pray she is well.  My son was diagnosed accidentally when he had imaging from a football practice injury this past September.  It has been a frightening journey so far.  Was hoping you might be willing to share any updated knowledge about LGFMS/what to expect with me.

WorriedMomma

Edenmist said:

Ossifying Fibromyxoid Tumor

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.  

 

Edenmist

My 14 year old son had proton radiation prior to surgery in December, 2019.

WorriedMomma

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.

14 year old son LGFMS

Hi murphy43...Hoping you have remained well.  Would you please share info about the case study you are participating in.  My son is being treated at the Abramson Cancer Center/Perelman Center in the Hospital of the University of Pennsylvania in Philadelphia.  His case was extrememly rare because he had 2 tumors (not connected but in close proximity to each other) in his upper left thigh.  It was an extremely difficult surgery and required lots of vascular reconstruction along with loss of much muscle mass.  Please continue to share any advice or knowledge you may have about LGFMS.

WorriedMomma

christinenz said:

I'm new here

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. 

14 year old son LGFMS

Hi christinenz...My son has also battled LGFMS.  His was in the upper left thigh close to the groin.  His 3 month follow up scans were okay but he has a lot of soft tissue edema and a few small seromas because of the loss of muscle tissue and intense vascular reconstruction.  Have you been well?