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Fibromyxoid Sarcoma

cyndihase
Posts: 2
Joined: May 2009

I had a lump they were "watching" for 6 years. I decided to just get it out and it was a fibronyxoid sarcoma under my right arm. I am currently doing radiation and then another surgery is to follow. The margins were not clear and because I was not put under...it was a local....everytime the numbing needle went into the skin and back out they are afraid the cancer cells went to the skin so I am getting radiation on the skin and in the muscle tissue.

I have never found anyone with a fibromyxoid sarcoma.....Please Please Please email if you have had the same diagnosis. The chance of it reoccurring is 68percent but with radiation and skin grafting it should be 10 percent. I am afraid of skin grafting. This is my second battle with cancer the first was in 2001 with thyroid cancer. I am 48 year old female.
Email me at cyndihase@yahoo.com with Sarcoma in the title. Thank you

Sammys_Mom
Posts: 3
Joined: Aug 2009

I just wanted to let you know that I saw your post. My daughter had a fibromyxoid sarcoma which was removed when she was 2 and again at 3 (they weren't able to get a clear margin the first time). She is 6 now with no further reoccurances.

I saw that yours was the only comment about this particular sarcoma and I wanted to share that you're not alone in having had this.

I hope that things are going well for you and that they've been able to contain and prevent any further occurance.

Best wishes,
Dana

izzyboo
Posts: 2
Joined: Aug 2009

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.

Fredisgone
Posts: 1
Joined: Aug 2009

Fred is what we named the abdominal "cyst" I was diagnosed with 5/8/09.

Oh boy what a journey. January started out with a slight back pain. March was prescribed anti-inflamitory's even after describing a different pain other than back pain.

4/13/09 I had black stool and was admitted to the hospital. After an endoscopy, and no problem seen, other than poor kidney function was released from the hospital . Still with the back pain. Two weeks later went in for a recheck, more "back pain" then x-rays. 5/8 I wet back with severe back pain and an indescribable burning in my groin "WOW".

That is when Fred was discovered. diagnosed as a cyst. CT scan, and sonogram. Had to wait 9 days and was referred to Johns Hopkins. THANK GOD. That is when the first mention of the "C" word came about. Told my Dr. that I had a negative biopsy. He informed me that at Hopkins they did no waste the time or money on the biopsy. It needed to be removed. And was matter of fact that cancer was a possibility. But to put it in his hands.

At that time I had a CT scan with dye, still no real success with prognosis. Surgery scheduled. Then the day before had to cancel because of elevated stress hormones. Imagine that. Had to do a 24 hour urine test, then wait another week for surgery.

Finally 6/9/09 Fred was removed. Thank God my wife of 31 years is a saint.

Yes it was a Sarcoma. 13 3/4" in length, and the diameter of a soccer ball. Good margins though. No Radiation, no Chemo.

I go for my first cat-scan Monday. Wish me luck. I am on edge.

Thanks for taking the time to hear my story.

JVigil9
Posts: 1
Joined: Aug 2009

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.

cyndihase
Posts: 2
Joined: May 2009

I had an unbelievable surgery and doing fantastic for my fibromyxoid sarcoma....under my right arm. Would love to chat off forum as I forget to check. cyndihase@yahoo.com

I am wondering how your are doing and what your treatment has been since your last post. Hope all is going well and you found a great doctor team!!

erock17
Posts: 1
Joined: Dec 2010

I was also diagnosed with Fibromyxoid Sarcoma in my thigh. I was 23 years old when I was diagnosed in 2008. In 2008 there was hardly any information compared to what I can find now on the internet. I find this very interesting.

Mroche44
Posts: 1
Joined: Aug 2009

I called the golf ball sized lump I found on the back of my neck "igor" (from young Frankenstein)
I accidently found it by raising my arm to adjust a pillow while sitting on the couch--
it was the only position in which you could feel it. I found it on a Sunday night-
was in my doctors office before they opened the next morning. I was told
not to worry-- if it was still there in 6 weeks they would refer me to a specialist.
The next morning I went to my ENT doctor. He happened to also specialize in
head & neck tumors. Within 10 days I went for a biopsy--it came back benign.
My doctor called to say even though the pathology report said benign he didn't
believe it. My surgery was scheduled & "igor" was removed. The frozen section
at the time of the surgery came back as a benign schwanoma. 5 days later the
full pathology report came back inconclusive. "igor" went to Brigham & Womens
in Boston where the verdict was fibromyxoid sarcoma. Within 4 days I went back
for the re-excision of my neck to get better margins checked. I went for a consult
at Dans Farber & ended up going for radiation--36 treatments. June 30th 2009 marked
1 year anniversary of the first surgery. So far so good. I have decided to continue
all of my followup visits at Dana Farber. They are the most knowledgable in my area
in dealing with sarcomas. All of my local doctors in New Haven had never treated
a sarcoma patient before.

anniegee911
Posts: 1
Joined: Sep 2009

My son (6 at the time) was diagnosed after months of "watching" the golf ball sized tumor on his forearm. Finally found a Dr. that wanted to take it out. The folks at Austin Diagnostic Center weren't sure how to call it so they sent it to the Mayo clinic. Mayo called it..LGFMS. They went bac in to remove the tumor bed tissue and the closest lympnode. Luckily the margins were clear and the tissue and lymp node was clean. No radiation or chemo but 4 follow up MRI's. He has been clean for 5 years now. As that it has a relatively high reoccurance rate, he knows to check his limbs for any new bump of any size. There's not much we can do about the really deep ones, until they present some other problem. When Jake was diagnosed with this, I searched the web for info. Very little to be had. It's nice to know there is more info our there. Good luck to you.

Jasminesmom
Posts: 1
Joined: Oct 2009

Hi Cindy,
Glad to hear your surgery went well and to hear everyone else's stories. I was diagnosed in June with the same thing. I woke up one am the last day of May, stretched and felt a large knot at the top of my butt/hip. It took a while and a few surgeons, a lot of inconclusive results and a few surgeons to finally get a diagnosis. None of which I trusted by the way-I had one telling me it was for sure a blood clot and didn't even want to look at or feel the area. He wanted to do only a needle aspiration and as he said "if it pulls blood we will leave it and if it pulls fluid we will take it out". He was highly recommended, and a surgeon for over 30 yrs, but I did not feel comfortable with him and his flippant attitude. I really was my own advocate and let no one touch me until I had the needle asp./core biopsy and had done some research for myself. From there I went to pick up my own test results because my Dr. never called me to tell me what I had. I referred myself to M.D. Anderson due to how rare this is and that we do not have any surgical oncologists in Pensacola, Fl. I went through radiation, finished Sept 4th, and surgery is scheduled for Nov. 12th (the Dr. is going on extended vacation so I had to wait until he returned). It is in my gluteus maximus. I will be 38 tomorrow and this is the first time I have been diagnosed with cancer. I am not really too worried but the area is supposed to make the surgery "risky". I haven't had surgery since I was 18 months old so that is the only thing that makes me a little nervous. If you think of any advise or suggestions for surgery or other then I am glad to hear them.

Thank you

constantiak
Posts: 1
Joined: Jul 2011

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

1braveheart
Posts: 1
Joined: Jul 2011

I was diagnosed with a large tumor on me shoulder and down my bicep. I am a 57 year old male and in the physical prime of my life{ or was any way} They did the MAID form of chemo on me for a 4 day stay in the hospital, then daily radiation for 14 days. Then the chemo, then radiation for 3 times in total. They then took the tumor and I was blessed with great margins. This all happened last year with my surgery in November, 2010. after the surgery, I then did another chemo and radiation x 3 again to make sure it was not floating around in there. I have just received my 2nd three month check and thy found a suspicious area they wanted to biopsy. I am having a very hard time keeping it in today and not getting depressed. Functioning in a normal capacity is difficult. Can't seem to get out of my own head !!

Dermarac
Posts: 2
Joined: Jul 2011

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!

smbrooks
Posts: 2
Joined: Aug 2012

Hi it's puts a lot of hope in me to hear your story, as of last week I had no idea of fibromyxoid sarcoma and still have a hard time saying it.
The other hardest hit thing is I'm not the one with this my 13 year old daughter is a victim. As a father it hits hard so any kind of information provided to me would be very much appreciated. The sarcoma was located in the fleshy part of her cheek, and came right out the sarcoma was sized under 3cm in size classification was a low grade fibromyxoid sarcoma with areas of hypercellular activity. There was no necrosis or significant mitotic activity. I would like to hear more about DFCI we are driving to s hospital in Tampa to get more information in one week. Thanks again Sean if anyone can give any information my email is smbrooks32@gmail.com please any information is welcome

Nitram
Posts: 1
Joined: Mar 2012

About 7 monthes ago I had some sinus pain and then noticed a small lump under my right ear. All of the doctors thought the lump was a lymph node and said it should go away after a few weeks. Well the summer went by and this thing was still there but it didn't appear to be getting bigger. A biopsy was done is early December and it came back inconclusive but not a cancer. Still, I didn't want this lump on the side of my face so I asked that it be removed and the ENT doctor also wanted it removed too. About two weeks ago it was removed. I remember waking up right after the operation and the ENT doctor (also the surgeon) said they had removed a "pearl" and everything was good. Well, about 8 days later the pathology came back on this "pearl". It was Low Grade Fibromyxiod Sarcoma. Two days later I went to see a team of Cancer specialists in a Boston Hospital. Since the original operation did not take into account that this tumor was cancerous, they recommended that local radiation theorapy is needed to ensure all of the cancer cells are destroyed. In a few weeks I'll start 6 weeks of radiation. I feel lucky because this cancer was caught early, has small size 1.7 cm, and was located superficially. All these factors indicate a favorable outcome once radiation is complete. I hope this post can help someone in the same boat as me in the future. God bless.

heatham
Posts: 1
Joined: Jun 2012

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

smbrooks
Posts: 2
Joined: Aug 2012

I understand and will pray for your daughter's health. My daughter is 13 and we just got back results a week ago that confirm the low grade fibromyxoid sarcoma is what she's has we will be heading over to Tampa next week for more information. Please email me anything my email is smbrooks32@gmail.com

Chez
Posts: 23
Joined: Nov 2009

Hi everyone. I have posted in the fibrosarcoma forum but I came across this site so I will add my story here too. I noticed a lump near my elbow in March 2009. I had been seriously dieting for my son's wedding. I was taking meal replacements and reached my goal of 70kgs. I am now concerned about doing this as they must surely have preservatives in them and I can't think why I would get this cancer. I went to a doctor at a skin clinic and showed him the lump which he thought was maybe a cyst but added I could have an ultrasound which he did not refer me to, so I thought maybe skin doctors don't do that. Still in March 2009 I went to see a GP about something and mentioned the lump to her who also said it was only a cyst and not to worry about it. In May I went to another GP who now said it was a lipoma and I could live with it. However in September I went to another GP and having done some research I told him not to tell me it was a soft tissue sarcoma after all this time and all the doctors. I'm sure this influenced him as well as his examination of my arm. He sent me for a ultrasound, result suspicious. Then a fine needle biopsy and I was told by the doctor to get the lump removed even if the pathology results are inconclusive (thank God for him). The pathology results rang alarm bells so into hospital urgently and 2 operations and 2 months of radiation later I was cleared. It wasn't so nice hearing from the oncologist on my first visit that I was lucky to have my arm as the first line of treatment in the past would have been to amputate. Only on the last visit did he tell me that it could be cured. I have to have CT scans 6th monthly for 5 years.Last CT scan done July 2012, results show no recurrence or evidence of spread. 2 years to go and I am well guys. I eat healthy fresh food products full of antioxidants and omega 3s and have included legumes, nuts and seeds into my diet. I take a supplement of Vit D which I found to be deficient in, CoQ10 and Krill oil to increase my immunity. I have read a very good book called "Cancer to Wellness" written by a cancer survivor and it makes a lot of sense. I go to the gym 3 times a week to make sure I exercise as I am a bit slack in exercise and I need to increase my fitness. I take care of my physical, mental, emotional and spiritual health. I know not to get too upset or stressed about anything as it will increase the hormone cortisol which is linked to obesity and cancer. It is hard not to worry about your children but if I wasn't here they would work it out themselves and they really just want someone to listen not tell them what to do or to do it for them as they are independent. I watch my weight as obesity is just not good for our health. I outreach to others as this in turn helps as it takes focus off yourself and you are lending a hand to others in need. I go to church....what better place to be spiritually and I talk to God and tell him how I feel whether I am angry or happy and thank Him for the day. I only worry about TODAY as best I can. Tomorrow doesn't exist and yesterday is gone. I try to forgive everyone and everything that hurts me as if you don't you only add hurt to yourself. I smile and laugh often and sometimes act a fool but who cares.When others are laughing with me we are all happy :)

Len66
Posts: 1
Joined: Nov 2012

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.

pibbles
Posts: 1
Joined: Sep 2013

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.

sandysarcoma's picture
sandysarcoma
Posts: 5
Joined: Oct 2008

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.

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