CSN Login
Members Online: 8

You are here

Myxoid liposarcoma in right thigh

2police
Posts: 6
Joined: Oct 2004

Hello,
My husband was diagnosed with myxoid liposarcoma on September 10, 2004. He travels alot, and found a lump on his thigh (size of a small lemon) when he was in indonesia on July 4th. Upon returning, he showed it to me, and I made an appointment the following day for him to see the doctor. The doctor refered him to a specialist (sports & medicine). They did several tests, to include MRI's, CT, X-ray, ultra sound, followed by a biopsy. The biopsy came back as a benign myxoma. My husband was given the option to remove it or leave it. Looking back, thank God he made the decision to remove it. As we now know, nothing is 100%, and we were told that after two biopsies, this was indeed a malignant tumor. My husband is now being seen by a wonderful team at John's Hopkin's Hospital in Baltimore. He had surgery on October 8th, to remove the margin (very wide excision). We were told two weeks ago, that the results of an extensive biopsy showed no sign of residual liposarcoma. He is still recovering from the surgery, and is scheduled to receive 35 rounds of radiation in a few weeks. We have also met twice with an Oncologist, yesterday being the second time. However, that meeting did not go well. The first meeting he told us that chemo really has not shown to be effective for this type of cancer. He gave us some figures to think about, and told us to come back after the surgery to discuss our options. Yesterday we went and saw him again, only to find out the the figures have changed since we last met. The first time we met, he told us that this type of cancer has a 20-30% chance of going elswhere. Yesterday that number was increased from 20-30% to 30-40%. This really disturbed me. He also told us that if my husband did not do it now, and it returned in the future, basically that would not be a good sentence. He told us at that point there would be no hope, and they would just try and buy time or so to speak. Could he have been just a little more negative!!!! I am very upset with this doctor, and have decided to get another opinion. We have two small children, and are in our mid 30's. Never did I ever imagine we would see something like this. I am very scared and am having a difficult time dealing with all of this. I would like to chat with someone who has been diagnosed with this type of cancer. Did you opt for radiation only? if so, how long has it been? has anything else showed up? As you can see, I am deeply lost. Mike is my best freind, and I just can't imagine this journey without him. Any information would be greatly appreciated.
Rhonda
spouse-diagnosed with myxoid liposarcoma in back of right thigh, stage 2 (chemo doctor said 2 or 3 does not make a difference, so you might as well say stage 3!!!) Located right under the skin (not deep) which they said was very rare.

scintillator
Posts: 2
Joined: Mar 2011

I just wanted to reassure people newly diagnosed with myxoid liposarcoma that the statistics are definitely on your side. In about 80% of cases it never comes back! Furthermore, even if it does metastasize there can still be a reasonable chance of a complete cure with surgery and first-line chemo, and even if incurable there is a good chance it will progress indolently. Finally, even when all else has failed trabectedin (Yondelis) has produced astoundingly good results in holding refractive metastatic myxoid liposarcoma at bay. So there's much more than just hope here - there's expectation.

angel55
Posts: 2
Joined: May 2011

Hi..
I just read your post, and wonder if you can talk more about it, I was just recently diagnosed, had a surgery for a lipoma but then pathology report showed it was a liposarcoma with less than 10% of cells,

I am being treated at Mayo clinic, and they offer radiation and surgery, althougth right now we dont know as this is very low grade and is unknown from the first surgery what is left.. the scans MRI PET and CT scans are all negative for tumors, or spreading of cancer cells of any kind.
what else did you do as far as alternative and other medicine?
how are you doing?
I have chosen not to do radiation, and will stick to surgery with wider margins and then macrobiotics diet, meditation, yoga, less stress and turning my whole life around..

please contact me

Angelina

SmedCon
Posts: 10
Joined: Oct 2011

Angelina:

I had the same situation to occur. Diagnosis = Lipoma and biopsy = liposarcoma. I have a second surgery with massively side margins and all looked good. I am three years out and found out a few weeks ago that is is back. They are wanting to amputate but I said, "Not so fast"! I am considering all options. I am told that Chemo is of no use but now they are suggesting radiation after surgery if I refuse amputation. Is there any body out there that has gone through limb amputation?

David

Doc123
Posts: 2
Joined: May 2011

I found a small lump in my upper thigh groin area in October 2010 , I was studying for a Board exam so I waited 2 weeks to have a surgeon look at this after getting myself a CT scan which showed a solid mass. I am a 49 y.o practicing physician and was shocked to learn when my hospital pathologist called me while I was seeing patients, to tell me that he felt this was a myxiod lipo sarcoma. Like all of you my heart dropped into my stomach. My wife and I were devastated with this out of the blue diagnosis as I have always been very healthy, athletic and never smoked. I sought consultation at Sloan Kettering in NYC. I was seen by Dr. Samuel Singer who felt , I should have a wide excision only , as scans MRI and chest CT was negative. He did not recommend radiation therapy. Yes I had a shark bite wide excision all margins were clean. Dr. Singer stated that my tumor was 2.5 cm , with clean margins and negative distant ot local spread work up that chance for cure was 90 percent. Now it,s May 2011 I have recently started to have some pain in my groin near the surgical site . I am worried about this and contacted Dr. Singer. I am scheduled for MRI this week and praying this has not come back this fast. I have small kids and treat patients with cancer everyday . I am hoping that this works out, it tough being a physician and patient at the same time. Reading about the survivors has helped and inspired me to stay positive. I hope this post helps someone.

Doc123
Posts: 2
Joined: May 2011

Thankfully my MRI came back negative as well as my CXR ..my discomfort has been attributed to my increased activity with my kids as the summer months are upon us. My wound also is contracting a bit , my physician states this is causing the lumpy area around the surgical site.
Hopefully the next six months will be uneventful.

forgetmenot
Posts: 4
Joined: Jun 2011

2 years and counting. i am 48.5years old female.
2009 orthopedic oncologist took out my biceps femois shorthead muscle of right thigh. lump size of 11.5cm x 5.5.

started out with a lump and ignored it for a while until my lower leg started to numb. mentioned to my gynocologist one day during routine girl checkup. she agreed that it might just be a fat lump but refered me to the chief surgeon. looked from the surface he also thought and said it is a simple office procedure to remove the lump but did agree with me that we should do some testing. he phoned on the day ct result(or was it mri i can't remember which) came back and said he won't be able to help but refered me to an orthopedic doctor. from his tone we kinds knew this is more than just a fat lump.

an office biopsy was done on a friday and comments were "looked clear and not so bad". we got called in the following monday when the lab results came back and he said that the chances are good that all will be removed except one side where its touching the bone. with the lump he took out with large margin on all sides and scrapped the bone as clean as possible. general anethetic with a blocker to the leg. came home after 2 days with cruthes and bracing. i quit taking the painkiller after 2 days because it made me way too lethargic. pushed myself into the pool 2 weeks thereafter.

my orthopedic oncologist said the chemo will not increase my chances. and we also consulted with an radiology oncologist and he mentioned that it will only increase my chance by 1% from 15% to 16%, so we elect no radiation.

have not yet gone hiking but my walk appears normal with exception that my foot flairs out alittle and my left shoe wears out faster. the leg is holding more liquid and feeling weird and with shooting pain once in a while but surely these are all a given.

my cut looks like a pantyhose line running down the back of my leg.
now monitoring with: mri of the leg, ct of chest and abdomen, x-ray of chest. started out every 3months and now stretched out to 6months. from the ct reading they found that my thyroid is abnormal but thats a seperate story all together.

my medical premium went from 340per month to 670 of the past 2 years, and starting july will be 900. so the insurance company must think that i will live on forever.

yes, this has changed my mental state about life in general. and i prioritize my life and schedule it differenly now.
yes, life is a crapshoot. all my life, i eat healthy, no smoking nor drinking..etc. ..friends comment that i should pick up few bad habbits and maybe i will live to 100...ha !

hope the comment helps answer few questions. and feel free to write me at forgetmenot20080@yhoo.com

ZiegenSauger
Posts: 5
Joined: Apr 2011

It was very large and very advanced.

However we have the best doctors, several serious treatments and absolute chances for success.

All cases are curable, all treatments are successful.

Just go for it and stand for the fight.

Paul from Florida

dianasoler
Posts: 1
Joined: Nov 2015

My mom was diagnosed with a stage 4 but encapsulated Myxoid Liposarcoma on her left leg, behind her knee. It grew so that it became circumferential surrounding the bone. Here in Puerto Rico they wanted to amputate, said it didn't respond to chemo or radiation (this without even being sure of what type of cancer it was). Thank god we went for a second opinion to MD Anderson Cancer Center in Houston. After chemo and radiation to reduce it Dr. Valerae Lewis removed the tumor and the bone, replaced it with a titanium implant and it's five years now that my mom is cancer free and walking with her two legs. There is hope friends. Get a second opinion.

annie43
Posts: 1
Joined: Feb 2016

Hi dianasoler,

Your story both scares and encourages me. Our son, 46 also lives in Puerto Rico and was diagnosed with a large myxoid liposarcoma on his right thigh in September, 2015. This is roughly 7 inches long and is encapsulated with no metasties detected. He has thus far undergone 6 rounds of chemo, which did not reduce the size.  Radiation was begun today.  He has requested use of Yondelis, (tribectadin) which the FDA authorized for use in the in USA in Oct. 2015 only for liposarcoma and leiomyosarcoma. His oncologist, Dr. Jorge Lugo Rodriguez Lugo, who practices at Torre Med San Lucas in Ponce, is in agreement to this, but our son's insurance (First Medical) has declined to cover it.  Dr. Lugo has referred a request to a foundation to cover it, but we haven't heard the decision yet. Our son does have a cancer rider, Aflac, but I am not sure how that works in this case.  Dr. Lugo sent our son to see a surgeon in San Juan, Dr. Juan Bibiloni, who wants to get this tumor reduced prior to surgery in order to save the leg. My husband and I live in New York State and have researched this beast of a disease. Have hope for Yondelis doing the job.  Also NanoKnife which I understand is not offered in PR.  It is here in the US and in NY at Rochester University Hospital.  Just joined this site today.  Wondering specifically who your mothers providers were, if you wish to share that, and what you did about insurance in the states? Has anyone on this site been treated with Yondelis or known of someone?  My research indicates it is effective particularly in this type of cancer. Any info very appreciated. Thanks.

Pages

Subscribe to Comments for "Myxoid liposarcoma in right thigh"