Liposarcoma on the left thigh

DeniceH said:

4Wade4Us
I had essentially the same type of cancer. They had to remove my entire rectus femorus muscle in my left thigh (the large front muscle) along with the tumor. I had daily radiation for 6 weeks and am now doing fine! The reason they don't use chemo in these types of cancers is because, even with the big guns, this cancer is super resistant so it's not effective.

My oncologist had MRI's done of my leg every 6 months and CT's of my lungs every 3 months for the first 2 years. Now I only have to go in every 4 months for these tests. I know this type of cancer matastisizes to the lungs, which is why he's being so thorough with those scans.

Please let us know how your husband is doing.

woollysmom said:

I saw your stories and I think maybe you all can help me
I've been very sick with Lyme disease for 2 years and about 10 months ago I started to feel human again. I was finally at a point I was functional and able to take care of myself.

Then about 2 months ago my body started to refuse the treatment for the lyme. Each time we tried to administer it I started to have anaphylactic reactions. I also started having extreme night sweats, day sweats, losing weight and started to develop a lump in the back of my thigh. Its quit painful and keeps me up at night.

I went to see my doctor 3 weeks ago and he said it was a lipoma, but i wasn't so sure due to the pain in the leg, the fact it is growing and symptoms such as fatigue i had been feeling.
Next week saw a plastic surgeon who informed it was a Bakers cysts- and to go see an orthopedist. So I did and the orthopedist did an MRI and another test (I forgot name of!)Week after seeing plastic surgeon I saw my lyme dr. who felt it and said "thats not a lipoma- its hard! You need an MRI."

To make this long story short when the MRI results came back they did not show the large lumps on the back of my leg-the orthopedist seemed perplexed because the did not appear in the MRI- yet he was touching them and confirming the lumpy tumors! Weird- he said again he though Lipomas.

Im not sure what to think. I know these things in my leg are there because I can feel them, see them and they are so painful they keep me up at night. Is this common for a Lipoma? My overall concern is the possibility I have lyposarcoma and im getting railroaded through the medical system without any resolution!

I have no idea what kind of doctor to see next... does a lipoma deeply embedded in thigh muscles cause pain like ive described or would that be something like a lipoma.
I dodnt expect anyone to diagnose me as a doctor-please just share what your experiences were so I can figure out whereto to pursue this or not.

Thanks for your time, and I hope this is understandable-i tend to get confused at times from the lyme.
Thanks, Steph

friscov2 said:

Dr. W. Earl Brien of Cedars Sanai In Los Angeles
Hello.

I am not sure if you are continuing to read this information; however, this doctor W. Earl, Brien of Cedars Sanai in Los Angeles is a true hero to my family. Because of your posting, my family consulted with Dr. Brien as a second opinion.

He told us that radiation oncologists would want to give doses of 4500-5000 RADS to a myxoid liposarcoma in the lower leg. His advise was to not allow the rads to exceed 3500, or in his words, this amount of RADS (radiation) would cause extreme damage to the lower leg.

He was right on all counts. The radiation oncologists wanted to give this higher amount of dosage to lower leg. We would not allow the amount to exceed 3500 rads. Immediately following a twelve-hour surgery, the very special microvascular surgeon stated that the radiation damage was severe. We believe the leg was saved because of these two great special surgeons. one who advised us to not exceed the specific dosage, and the other whose work is renowned in the community.

Also, I believe of importance, the radiation did not shrink the tumor. It did cause extreme damage.

Rdavis5872 said:

Tumor on left thigh
Hi, about 2 years ago I noticed a knot on my left thigh area. Mentioned it to my Dr. which looked at it felt it and said fatty tumor, nothing to be concerned about. 2 years later, after the knot has more than tripled in size and is now causing pain when I lie on it and is very noticeable. It even wraps up under my leg now. Was sent to see a surgeon and he said because it is not defined, he is going to send me to have a MRI. I am very nervous. Does anyone have any pictures of what their tumor looked like before or what they experienced with the size and pain or no pain??

MAX63 said:

Tumor on left thigh
Last summer I was in the shower and noticed a large bump on my left thigh which almost seemed like I had an extra muscle. I could not sleep on it a and my gait started to change which caused knee and foot pain. My doctor sent me for an ultrasound but I was only diagnosed as having a mass in one of my quad muscles. He then sent me for an MRI and in February 2012 I was diagnosed with having a Lipo-sarcoma tumor measuring 9" x 4" x 2" in my vastus lateralis muscle. I was immediately sent to an orthopedic surgeon/oncologist. He prescribed pre-op Physiotherapy to strengthen my muscle because I had developed atrophy of the muscle (shrinking of the muscle). Then I had surgery in May 2012. The surgery went well and I was sent home to recover the same day. The recovery was painful but not unbearable. The painkillers keep you sedated and help you sleep but any movement will be felt. I was able to move around with crutches and I was able to go up and down the stairs with the use of crutches after 3 days. I had a follow-up appointment with the surgeon 10 days later and he told me that the tumor was removed entirely and no further treatment is necessary. I've resumed physio-therapy and I'm improving quite rapidly. My mobility is almost 100% however my left leg is still very weak and I need to be careful when I walk because my knee could give out at any moment due to the weakened muscles. I still use a cane when I go out and will be on my feet for an extended amount of time. My left thigh is slightly smaller than the right one but my physiotherapist says that it will eventually go back to normal within a year. I do have images from my MRI I could send you. I got really scared and discouraged when I first saw them but this whole ordeal really hasn't been as bad as I expected and I'm delighted that chemo or radiation isn't necessary.

Nana b said:

Don't research any further,
Don't research any further, go get it seen! Sarcoma is nothing to wait, on, neither is a lump on your thigh. My Mom ignored hers and we just found out about it. Her heart got her to the ER, now her thigh is secondary, and they are talking cutting her leg off.......

Get it seen! Hope it's nothing........

Overcomer09 said:

HEY
I'm so sorry to hear about all your sufferings and the lack of compassion and medical care . I had insurance but it only paid 80% of my radiation treatments .
I know the feeling of fustration .
My left cheek is almost twice the size of my right and no one seems to know what to do about it . It is affecting my eye and vision also . I had a CT Scan and it shows nothing , therefore they say it is nothing !!
The brain tumor has nothing to do with this because it is on the right side .
They ignoring the swelling and loss of feeling in my face .
I'm being treated for fibromyelgia and I also was told I have anklosing sponylitus .
Just keep the faith in GOD because doctors are only flesh and blood human beings and can do so much . God can do miracles and I have seen them done . We need one now . GBY

many operations for over 20 years.

first a huge lump on my right butt cheek my dr said it was a cyst

so I waited for months My wife said it was getting huge 

I went to the ER and There my life changed forever They took xrays and sent them to mass general in boston

results Lipo Sarcoma. first radation treatments to shrink it then the removable with no blood. taken

they cut right thru my upper thigh down to my lower thigh lost my butt musle and thigh musle

took over 18 hours

after recovery I had chemo I was in the experment volenteer group

I made a full recovery   they saved my leg and I was able to walk  fine for over 17 years

Then it came back in my calf same side had it removed no chemo just radation

afew months later it came back on my thigh same side got it removed few months later it came back same leg lower side this time i had to have plastic surery took a large area off my left thigh

very painful recovery 

a few months later it was back in my upper thigh they removed it and had to go in deep on my groin. same time i had one growing on my lower ankle same leg. 

now i,m getting chemo and radation it shrunk the tumor i will be getting it removed in december

i now have a hard time walking and swelling is a problem i have to wear specially made socks 

my family keeps me going. our twins both have autisum and one has bmr 

they are 31 now and still with us

I,m glad to be alive and can still walk I,ll keep you posted 

Thank You all who posts here

4myboys said:

Hi. I read with interest your posting as I was diagnosed with liposarcoma, round cell type, 1 month ago. Since then I have had surgery with dirty margin as the tumor was pressed against my femoral artery and nerve. The orthopedic oncologist was very satisfied nonetheless and has recommended rads and chemo. I was interested by the controversy over chemo. When you state that chemo is not effective for liposarcoma, I was told otherwise by my surgeon at U. of Chicago and also by an oncologist at M.D. Anderson, who both recommended chemo for high grade liposarcoma, particularly with round cell. I imagine the crucial factor is round cell vs. myxoid as the former is more aggressive and hence more reponsive? Where can I find more facts on this controversy? Thanks so much

Hi All,

My dad was recently diagnosed with myxoid liposarcoma on his thigh.  We just found out a week ago and like a lot of you, Im trying to learn as much as I can.From all the studies I have read, Chemo is not typically recommended but out of the 50+ sarcoma sybtyes, myxoid is one that IS chemo sensitive.  With myxoid type, if you have pure myxoid- chemo is not usually recommended.  If you have intermediate or high grade with round cell component, then chemo can improve your prognosis.  This is what I have learned from reading the clinical studies and other articles on pub med.   We have not found out if it has spread and Im still waiting to hear about the round cell but I was told it is grade 2 or intermediate which I think means he has 0-5% round cell??  Not sure if they will recommend chemo??  I know we are doing radiation before surgery.... did you all do chemo after surgery? if so, how long after?

thanks

tooto11 said:

myxoid liposarcoma

Hi All,

My dad was recently diagnosed with myxoid liposarcoma on his thigh.  We just found out a week ago and like a lot of you, Im trying to learn as much as I can.From all the studies I have read, Chemo is not typically recommended but out of the 50+ sarcoma sybtyes, myxoid is one that IS chemo sensitive.  With myxoid type, if you have pure myxoid- chemo is not usually recommended.  If you have intermediate or high grade with round cell component, then chemo can improve your prognosis.  This is what I have learned from reading the clinical studies and other articles on pub med.   We have not found out if it has spread and Im still waiting to hear about the round cell but I was told it is grade 2 or intermediate which I think means he has 0-5% round cell??  Not sure if they will recommend chemo??  I know we are doing radiation before surgery.... did you all do chemo after surgery? if so, how long after?

 

thanks

 

Hi. I had no idea that there was a group discussing left thigh liposarcomas, but can contribute a couple of comments in case it is any use. I had radiation for several weeks of just the tumor region, but no chemo, and then surgical removal of the tumor and related tissue. Male. Mid-40s at the time. No sign of any recurrence. Certainly not at the tumor site since you can pretty much see the leg bone under my skin. Not clear how to track it though. I remember there being comments at the time of people having additional issues even after 10 years though, and was searching for a related topic when I cam across this page. Treatments have changed over time though, and the definition of the "grade" of a tumor seems pretty imprecise.

Best wishes.

Hello all. Thank you for sharing your experiences.  Today's healthcare climate is scary and this information is helpful. 

I'm 40+ yo female in good health.  I've never had any major health issues.  About 1-2 months ago, I noticed a lump on my upper inner (right) thigh, inward toward the groin area but back a bit and still on the leg.  It feels to be deeply under the skin and is about peach pit size but I think it may have gotten a tiny bit bigger, it's hard to tell.  It doesn't hurt at all and I can move it around a bit though it feels like it's attached to the muscle or tissue underneath.  I've never had any issues with lumps or cysts in this or any other area on my body.  

I moved to a new city am unemployed and uninsured.  To the best of my knowledge, I don't qualify for any heathcare assistance in this state and can't affort marketplace insurance.  I'm freaking out a little about this lump and not being able to have a doctor look at it.  I'm down to my emergency savings fund while I'm unemployed so it would really make things difficult (to impossible) to have expensive medical exams at the moment.

Does anyone have any thoughts about this?  Do you think this is something that can wait to be looked at in 3-6 months when I can get some insurance?  I'm worried and extremely frustrated.  As advanced as health care is in this country, IMO it should be more widely accessible and affordable.  Shame.