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Liposarcoma on the left thigh

Yiannis
Posts: 1
Joined: Feb 2005

I was diagnosed with liposarcoma on the left thigh when I was 30 years old(1992). My tumor was due to my negligence at the time, left to grow to massive proportions(17cmX12cmX5cm). It was surgically removed at the time by wide local excision and followed by 3 rounds of local chemo and 1 round of general chemo. I remained tumor free up to 1 month ago when I felt again something growing in exactly the same area of the previous wide excision. Subsequent ct and Mri showed that I had no metastases but surgical removal by wide excision again showed the same myxoid type2 liposarcoma(2.5cmX1.8cmX1cm)as 13 years ago. My doctors are confused on how to proceed with this. Their opinion varies to whether this should be treated as a new tumor or as a recurrence after 13 years. Treating this as a new tumor means no subsequent treatment since all margins of the wide excision are around 2cm and considered safe. treating this as a recurrent tumor means that radiation is needed but with all I hear about the side effects I am cautious to proceed. My new incision is about 30cm long and apparently I will have to be exposed to a lot of radiation. Any experiences with post op radiation will be greatly appreciated. Also any references please where I could get some definite answers would also be greatly welcome. Stay clean and be strong Best regards

Mike99's picture
Mike99
Posts: 12
Joined: Mar 2003

Sory about the timing on this reply but I have not had much time to read the post lately. My room name is Mike99 and you may catch me in the chat room. I went through the same thiong but I had the rads following a misdiagnosed tumor. It was diagnosed originally as a bakers cist and turned out to be a high grade Liposarcoma. I had many rounds of Chemo and after 6 years I had another tumor removed from the same area 2 inches over from the first. If you have any questions about rads feel free to contact me on my webpage by going to personal webpages on the home page and type my name (Mike99) in the search box and I will get back to you ASAP.

reneesings
Posts: 2
Joined: Jun 2005

Yiannis,

I am a survivor of Liposarcoma (myxoid) of the left thigh as well.

Chemo is not a recommended therapy for this particular kind of cancer - it does not seem to effect the cancer. I am so sorry that your doctors did not know this.

I was mis-diagnosed the first time - the doctor told me it was a fat tumor. After my first surgery - he had the gall to walk to the waiting room and apologize to my mother (he had cut the major nerve running from my hip to my knee - I no longer have any feeling)... The one good thing he did was put in touch with a Liposarcoma specialist. Dr. W. Earl Brien. He is now at Cedars Sinai in Los Angeles. Dr. Brien is the best there is. He also sent me to the radiation therapist that he said he would go to himself. Dr. Brien informed me that chemo does not seem to work with liposarcoma, and that a very intense dose of radiation will work - I was stage 3 at the time. I had a second surgery and then went to radiation (only after the staples were removed and I could walk again - they removed 60% of my muscle).

I went through 8 weeks of radiation. Radiation does not feel bad at first. It will likely, after time, feel like a sunburn. You MUST take care of your skin, especially if you are fair. It makes you very tired physically, but I would recommend it on my own life. I would rather feel the pain of the sunburn and the exhaustion than the fear of losing my life.

Please also ask your oncologist or doctor about the chances of getting lymphedema and what to look for and how to prevent it from happening.

I have been cancer-free for 4 years and counting.

If I can help in any way, please let me know.

4myboys's picture
4myboys
Posts: 1
Joined: Sep 2005

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

tooto11
Posts: 2
Joined: Feb 2014

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

 

gina1952's picture
gina1952
Posts: 1
Joined: Nov 2005

I had a high grade sarcoma on my right thigh/hip area almost 4 years ago. After it was successfully removed, along with some muscle and the capsule that surrounds the hip joint, I undergone 10 weeks of radiation. What I wasn't told was about one of the lasting effects of the radiation is the major nerve damage that I have now. My right foot is almost comepletely numb and the numbness is slowly taking over my right leg. As a result, my driving ability is almost totally gone. No feeling, means not being able to tell where the gas pedal is. I consulted with a neurologist only to be told that it will eventually get worse and in the same breath was told that not everybody needs their feet to drive. I should get hand controls. Nice for him to say, but out of my reach to get. Social security disablilty for income and bad credit makes it real hard to get a vehicle let alone have one modified. I've searched everywhere for help and can't find anything. Also, I get so tired of hearing about how I should be so grateful cause 20 years ago my leg would have been amputated. I don't know, but what's the use of having a leg if you can't do anything with it? Would I still have gotten the radiation if I would have known about the nerve damage? I just don't know.

Femi
Posts: 3
Joined: May 2006

Gina, my partner has also a nerve damage following surgery + radiation (pre- and intraoperative) 5 years ago for a sarcoma grade 1 (!) in his thigh. The ischiatic nerve is damaged and he is in constant pain and has symptoms like numbness, loss of feeling and tingling, getting worse from year to year. On top of that he has recurrence now and is getting treatment at moment - it s in the same thigh and operation is a big problem because the tissue is so damaged from the radiation.
The only thing which might possibly help the damaged tissue is hyperbaric oxygen treatment. Of course it is no miracle cure but it is scientifically proven to have an effect on damaged tissue. The nerve itself is another story - there is no cure for nerve damage, I understand you so well ..... quality of life is so much reduced by this and all that after we thought we got rid of the cancer and a better time is starting.

Overcomer09
Posts: 10
Joined: Jan 2009

I just read your post and was wondering how you are doing today ? I'm so sorry to read about the cancer you had .
I was diagnosed with myxoid lipo sarcoma on my left thigh in July 08 .
Mine was low grade , slow growing type .
I had biopsy then surgery for 12 cm length x 4 cm transverse and approx. 5 cm in AP dimension , tumor at Wake Forest Baptist Hospital in NC. in August 08.
I was told then I wouldn't need any Radiation Treatments .
I had a small lipo tumor removed from my left elbo in Sept. It was just a fatty tumor.

I was then told I should already be on Radiation Treatments for the leg .
Dr. Wilson thought I was already getting them . I must've missed something here along the way since I'm the pateint and they are the medical personal in charge . Hello !!!

I began my first of 35 Treatments in late December 08 after going all this time , thinking I was ok and wouldn't need it .
I am doing good except for the 12 inch scar and fear of damage due to these Radiation Treatments now .
I pray you are ok and for all the posts I read on here about cancer .
It's a horrible invasive disease that destrys and disfigures and takes lives like no other . We need a cure for this disease or find the cause and prevention .

Overcomer09
Posts: 10
Joined: Jan 2009

I did good with Radiation and was feeling great for a few months .
I was blessed to be able to travel to Europe for 14 days in June of 09 .
It was all I could do to make the trip there and keep up with the group .
I notice I have started going down hill again . Fatigued and not feeling well most of the time . I had some severe side effects to Ambein and other drugs ordered by my DR. for Firbromyelgia . I have all but stop driving except when I have to go out .
Then I was putting on face cream one morning and notice I have a swelling in my left cheek of my face .
I've had CT scan with nothing showing . I had MRI of the face and scull which shows a brain tumor pressing on the Pons on right side on my brain .

Then I notice the swelling and tenderness was back in my elbo where the first benign tumor was removed only this time it is a little into the bend of my left elbo . X-ray shows a fullness there now . I have not gotten the results of a recent MRI done on that .
I went to see a Neurologists at Wake Forest Uni. He thinks I may have had the brain tumor for years but will wait 5 weeks to see if theres any growth , that will tell him if it is benign or a mastisis of the other tumors I had .
I was told I may need Gama Knife Surgery if the tumor is not cancer .
I am now waiting to see Dr. Ellis the first of Sept. again , about his recommendation for removal of brain tumor .
I am told the swelling in my elbo and face is probably from spread of the benign tumor .
As of right now no one seems to know who to send me to for the facial cheek swelling .
It is not painful but my face feels numb and tingles, kinda frozen in the upper region . I am told that the face swelling has nothing to do with the brain tumor .
Right now I am strickly walking by my faith in GOD !! I refuse to ponder or worry over this . Will give you updates as I get them myself .

Spirit2010's picture
Spirit2010
Posts: 2
Joined: Aug 2010

I hope that you are doing good; and overcoming your health challenges. I am a 56 yr old female who had been in extremely good health till I came face to face with sarcoma. I just want to share my sarcoma experience with you and the rest of the warriors on this site.

In 2003, I was diagnosed with a liposarcoma on my left upper tigh/abdominal area. It was a low grade, but the size of a well depeloped fetus. This tumor was resting in the cavity between my stomach and the hip bone. It was also well attached to my leg arteries, muscles and nerves. I had just lost my job so I had no medical coverage. I mention this because the quality of the medical care you can receive and the outcome has alot to do with it. I was able to get medical intervention after so much stress and anger building up in me; since you dont want to die, but seems like no one out there really cares (hospitals/doctors) if you dont have enough money to pay. My tumor was removed, incision ran from my upper thigh up to my waistline, then turn left to my back. 3 weeks after surgery I had to be admitted back into hospital since my incision was totally infected. It was left open to drain for a couple of weeks. It was turning black (tissue dying)they had to put me on the wound vac (one of the most painful experience)for 6 weeks. I also had to have wound care 3 times a week for 3 months. I developed lymphedema, nerve damage just from the surgery. It took me almost a whole year to be able to walk without assistance. No surgery or chemo given. The sarcoma came back in 2006 on the same area. I had surgery to remove it. An inch of my main artery had to be removed and replaced with a synthetic. I pretty much dont have any muscle left on my upper thigh. The doctor could not close me up since there was not enough of me on that area to do so. I had to have an incision in the middle of my upper body; from my upper pelvic are up to below my breast bone. That was for the doctor to remove a long flap of not just skin, but tissue and blood vessels to patch me up on my left upper thigh and pelvic area. This time I was given radiation and chemo (Adriamycin/Doxorubycin). I have really bad nerve damage/pain with numbness not just on the side of my surgeries but all throughout my body. I get feelings of extreme heat, tingling, including on one side of my face. I have chronic body pain (fibromyalgia). Last August, I had to have a total hip replacement on the side where I had the cancer and radiation; since my bone was just collapsing/necrosis. I hace constant problems with my urinary tract system. Due to that I just had an ultrasound done which shows that my kidneys and bladder are fine; but the US did detect a defined oval image adjacent to my spleen which could suggest a mass. I was sent to get a CT of my abdomen, my appt is not until 3 weeks from now. My whole self has been a mess, I cried, got angry, got sad, I am still like in a robotic state. I keep telling myself it could be nothing, but then again, the ulstrasound shows an image of something where there should be nothing.....I have alot of faith, and I know that God will not allow me to go through anything big by myself.

If I can help with any questions, or if you or anyone just feels like sharing feelings, etc. feel free please. I wish the best to you and everyone else reading my experience with liposarcoma. May God walk you through your journey and your experience with less to no pain pysically and spiritually.

Overcomer09
Posts: 10
Joined: Jan 2009

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

Spirit2010's picture
Spirit2010
Posts: 2
Joined: Aug 2010

I hope you are doing well considering our situations. I have numbness, tingling and heat sensations all throught my body including my face. They did the CT of my brain but it came out normal. They also did a CT of my abdomen and pelvic area. The mass that had shown in the previous ultrasound next to the spleen IS NOT THERE? That is a great thing thank God, but it makes me wonder how wrong can these tests may diagnose sometimes? They did find 2 rib fractures? I havent fallen or hurt myself....so they are doing a full bone scan to check for osteoporosis and to see why I have those fractures. Again, it could be damage from the chemo. I now feel that the severe pain I had been having which they had told me it was a kidney stone; it was really more from the rib fractures. They also found two 5mm nodules on the lower right lobe of my lung. They recommended to have another CT done in 3 months to see if they are growing. They told me right now they were too small to characterize. I do have really bad chronic pain in my body; but I am alive and I focus on that every single day! I hope you are feeling better :) I also believe there is such a thing as miracles, God has the last word on everything! Let hang in there....God is not ready for us yet. You stay Blessed Always, Carmen

apage4alex
Posts: 6
Joined: Oct 2013

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

 

friscov2
Posts: 4
Joined: Jan 2009

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.

monkeymoo
Posts: 1
Joined: May 2012

I am so glad I have found this. I have a recurrance liposarcoma in my left thigh. It involves my sciatic nerve and I may loose my nerve. i'm going to get a second opinion from this Dr Brien as he seems to be good. I really don't want to loose the use of my leg. If I loose my sciatic nerve it almost seems better to get my leg amputated. I live in Australia but it would be worth travelling to the states if it ment saving my leg.

Anyone else have sciatic nerve involvenment?

cbalfour
Posts: 3
Joined: May 2010

My mom was diagnosed with having a fatty mass in the right thigh. Later to find out that it was Myxoid Liposarcoma. After that we were referred to two doctors that were supposely formilar with this rare cancer. Ends up that we started this ordeal end of January 2010 an did not get her first round of chemo ifosifomide until March 30, 2010. Orginally it was suppose to be March 23, 2010 the doctor went on vacation and forgot to order the treatment at the hospital so they sent my mom back home. After two session of this chemo the doctor comes to the family and say that he talked to the doctor from IU Hospital and they feel chemo will not work and there is nothing else they feel will work. My mom currently has atleast 9-12 tumors now on her body and they refuse to do or try any other treatment. She just turned 56 and has no insurance I feel this is why they truly are not trying to help her. The first day of chemo the doctor told the family if it did not work he had other option the next day there were no options other than making her comfortable until she die.

Any direction would be helpful

danielac
Posts: 2
Joined: Jun 2006

My husband was just diagnosed with rt. thigh well differentiated liposarcoma which seems to have the same dimensions yours had (15 cm).
We live in San Diego CA and the local oncology surgeon Dr. Bowman has a very good name here but nobody seems to know him elsewhere.
We went to UCLA sarcoma center this Wednesday to see Drs. Eilber (father and son) which said they see 1000 cases a year and asked us to come to them for surgery.
Do you maybe have any recommendations in this regard or anyone else on this forum can share with us personal surgery experience to help us to decide where to go to?
Thank you so much,
Daniela

tompilot
Posts: 1
Joined: Jan 2009

Daniela,
It's been three years since your post, so not sure if you're still on the network. I live in San Diego and was diagnosed last week with myxoid liposarcoma, with a right thigh tumor approaching similar dimensions. I'm still going through staging, but it appears to be low grade and localized. I am seeing Dr. Bowman, and as you, have heard very good things about him locally. I was wondering if your husband wound up having Dr. Bowman perform his surgery, what your overall experience was (with him and the other oncologists) and how your husband is doing today.
Thanks,
TP

jbchalhoub
Posts: 1
Joined: Jun 2009

I was finally doing some research on sarcomas and came across this list of communications regarding liposarcomas of the thigh. This is the closest Ive come to getting info on the specific cancer my father has. I feel ignorant in some ways and in others am afraid of too much information. The doctors have thrown a lot of information at me, yet in some ways, not enough.
It is my father who is 75 who was diagnosed with a huge sarcoma on the right hip. It is soft tissue, so I am assuming that is a liposarcoma. It is wrapped around the gluteous muscle. He is undergoing 6+ weeks of radiation (about half way now) and will hopefully be followed by surgery for removal and reconstruction of the hip/femur. I am concerned about his age and ability to endure all of this. He's done very well so far with radiation. He's had other issues creep up. Being diabetic (non-insulin dependent), also treated for memory issues (AD?) as well as the newest diagnosis of temporal arteritis, it's hard to keep up with everything. Any thoughts or suggestions out there on how to get help and understanding on all of this? I understand Dad is not a candidate for chemo, but i thought that was due to his age and fragility, not that the chemo might not be effective. In this area, H. Lee Moffitt Cancer Ctr is the only place set up to deal with sarcomas (and is fairly easy to get to). Hoping for help.

1soonerfan
Posts: 1
Joined: Feb 2009

MY SISTER WAS DIAGNOSED WITH LIPOSARCOMA OCTOBER 2007. IT STARTED WITH NUMBNESS AND A SUNBURN FEELING TO HER RIGHT THIGH. SHE HAD LIFTED A LARGE TV AND DOCTORS SUSPECTED A PULLED MUSLE OR A PSOAS ABCESS. SHE WAS DIAGNOSED AT SCOTT & WHITE HOSPITAL IN TEMPLE, TX. BIOPSIES WERE TAKEN FROM HER RIGHT HIP & LEFT BICEP. THE TISSUE HAD BEEN SENT OFF TO OTHER PATHOLOGISTS AT DIFFERENT HOSPITALS. TWO PATHOLOGISTS DID NOT KNOW WHAT THE TISSUE WAS AND THE OTHER SAID IT WAS LIPOSARCOMA. IT MAKES ME WONDER IF THAT'S REALLY WHAT WERE DEALING WITH. ANYWAY, SHE TOOK 3 ROUNDS OF ADRIAMYCIN AND IFOSFAMIDE THAT REALLY GOT HER DOWN. HER KIDNEY FUNCTIONS WERE BADLY EFFECTED FROM THIS COMBINATION, SO SHE WENT SEVERAL MONTHS WITHOUT CHEMO TO GET HER KIDNEYS BACK TO NORMAL. THEN SHE DID SEVERAL ROUNDS OF TAXOTERE & GEMZARE CHEMO. THAT SEEMED TO STOP THE GROWTH OF THE TUMORS. BUT THEN AGAIN SHE HAD TO LET HER BODY REST AGAIN DUE TO COMPLICATIONS WITH THE KIDNEYS. THE TUMOR IN HER ARM HAD BEGAN TO GET LARGER SO SHE HAS DECIDED TO DO RADIATION. SHE'S HAD 14 TREATMENTS OF RADIATION TO HER ARM AND 3 FOR HER LEG. THE TUMOR IN HER ARM HAS SHRUNK ALOT. THE DOCTORS ARE NOT UP TO WANTING TO DO SURGERY TO REMOVE THESE TUMORS FOR SOME ODD REASON. SHE IS ONLY 42 YEARS OLD, AND WE ARE VERY CLOSE. MY MOTHER AND I LIVE WITH HER AND HER HUSBAND. MY MOTHER TAKES CARE OF HER DURING THE DAY AND I HELP OUT AFTER WORK. SHE IS UNABLE TO PUT WEIGHT ON HER RIGHT LEG, SO SHE USES A WALKER AND HOPS AROUND. THIS IS A VERY SCARY AND UNUSUAL CANCER. IF ANYONE OUT THERE HAS ANY ADVICE OR SUGGESTIONS PLEASE RESPOND. WERE ASKING FOR HELP. GOD BLESS ANYONE ELSE GOING THROUGH THIS TERRIBLE DISEASE. ANGIE

mernp50
Posts: 2
Joined: May 2009

Angie,I hope you are still checking the blog from time to time. After reading your post I wonder if anyone suggested she go to MD Anderson in Houston? Usually chemo does not help Liposarcoma. There were several clinical trials at MDAnderson that used excision of the tumor and radiation with good results.

I have myxoid liposarcoma of the right thigh and am going through treatment right now. I had surgery to remove the tumor last month and will begin radiation this coming week.

If you can, get her to Houston ASAP to see what they can do for her.

You and your family will be in my prayers.

Alexlimeres
Posts: 1
Joined: Jan 2010

My wife was diagnosed with a de-differentiated liposarcoma grade 3 on her left thigh in Argentina in Feb 2009. Her tumor was 17 cm * 10 cm * 5 cm . She went through surgery immediately after the tumor was discovered and it was completely resected by Dr. Daniel Debonis in Buenos Aires, Argentina for a fraction of what we would have paid at memorial Sloan Kettering cancer institute. She then went through radiation therapy (I am almost sure that 6000 rads) and had to use some special creams to ensure there was no damage to her skin (and there wasn't)

we then flew to the US and visited memorial Sloan Kettering cancer institute (dr. Sam singer and Dr. Keohan) both confirmed that she should NOT undergo a Chemo (adriamycin and ifosfamide) therapy.
She is now doing great, has no tumor whatsoever, walks perfectly fine and enjoys a normal
life.

Gini61
Posts: 1
Joined: Feb 2010

Hello, its been very informative to read everyones postings. I havent yet been diagnosed with Liposarcoma, am still waiting for my appointment with my surgeon following an MRI. Its now been 2 weeks since my surgeon suspected a sarcoma and cancelled my surgery originally diagnosed as a lipoma, its been nerve racking!! Initially I was terrified, somehow now I am almost prepared.
It is located on my left upper thigh and I am very worried if its a sarcoma how this will affect my mobility and function. I have read they do quite a wide excision of healthy tissue. Also very concerned about the long term effects of radiation. I know I am definately going to refuse chemo.
I wish you all well! Good luck everyone.

DeniceH's picture
DeniceH
Posts: 9
Joined: Sep 2009

I was diagnosed with a high grade pleomorphic liposarcoma tumor in my left thigh about a year ago. (For more details, please see my page). I had to have the entire rectus femorus muscle removed and after healing from the surgery for about 3 weeks started a 6 week course of radiation.

My main doctor, advised not to have chemo because it tends to do more damage than good for these types of tumors, they are super resistant to even the strongest chemos.

Having said that I must stress that each individual case is different, with different stages of disease and each doctor has to go by what he/she believes to be the best treatment for each case. The biggest thing is having trust in your doctor as this person truly does have your life in her/his hands.

My biggest hurdle during all of this was not being resentful that my cancer didn't have the support system that say Breast Cancer Survivors did --- I felt like an orphan with nobody out there who could really understand what had happened to me.

So, even though I wish I could make it so none of us have or had this cancer, I am soooo grateful to read that there are so many of you survivors out there!!! I am no longer an orphan!! Thank you all so much for having the courage to share here.

~Denice

Beesley
Posts: 2
Joined: Feb 2010

I can sooo relate to feelings you described, Denice! I have never shared that with anyone. While I feel very fortunate that my cancer was treatable and that my prognosis is very good, I too, struggle with feelings of resentment. Few people outside the medical profession are even aware of this rare cancer. I'm thankful to have found this network and am hoping to find the support and understanding that I have been missing for the past 2 1/2 years.

Beesley
Posts: 2
Joined: Feb 2010

I just read your post and am wondering about your status. I had a large (20 cm x 10.5 cm x 5 cm) well-differentiated liposarcoma removed from my right thigh in August 2007. My orthopedic oncologist said that neither radiation nor chemotherapy were indicated with this type of sarcoma. He performed a wide excision, removing all of my rectus femoris as well of some tissue from other neighboring muscles. While losing so much muscle certainly has affected my mobility and function, I am thrilled to still have my life - and my leg - to boot! I wish you the very best and look forward to hearing from you.

michael1helen
Posts: 3
Joined: May 2010

Your case is similar to mine; I too had neither radiation nor chemotherapy and that was 38 years ago...i have a wide incision/scar...but that's ok with me...I stillhave my leg and ME!

turner4
Posts: 1
Joined: Oct 2010

Hello,this is a very informative site. I am an almost 34 year old female and a mother of 4 small children. I discovered a small lump inside my right thigh 2 month ago that was almost pea size and now it is the size of a large grape. I went to see a doctor who said he wasn't sure if it was a lipoma or a cyst. He sent me to get an ultrasound done and I was not satisfied with the doctor doing it because it was a rush job. He only took me because my insurance is undergoing changes and before he even did the ultrasound discussed surgery.He did the ultrasound and had me out of the office in less than 5 min. I had to ask him why he wasn't yet giving me the ultrasound. He told me it was just a lipoma, but if it got bigger he needed to take it out. Should I have any other tests done? From what I read, MRIs are necessary and an ultrasound machine should be present during the removal of such a growth. My husband is military and we live overseas and the doctors told me that they can just remove it in the office and I think this is wrong. What type of doctor should do this? A general surgeon an orthopedic oncologist? Is there a size at which only they take it out on? I have no pain with this growth, but am concerned if it continues to grow at the rate it has, I may let it go to far. The military docs encourage me to remove it though even though they think it is just a lipoma and biopsy it, but from what I read..if it turns out otherwise then I may have some major issues after with re-removal. Also, this doc said that you can tell right away on an ultrasound by the way it looks if it is a lipoma or liposarcoma. Is this true? Please, any good advice is very much needed. The military system for spouses tends to look for the cheapeast way to rectify any problem and I am the whole world to my 4 small children whose dad is always deployed. Please offer me any useful advise on these questions. Thank you.

hamza1984
Posts: 3
Joined: Aug 2010

My mother has gone through this same scenario, please consult specialist oncologist for this, because lipsorcoma if got cutted or removed, it become malignant and expand.

See my post to view my story, if you need any further information, you can contact me at hbn1984@gmail.com

Notalipoma
Posts: 1
Joined: Jul 2012

It sounds like my case is similar to your wife's. I hope she is still dong fine. I had a grade 3 13 cm myxoid liposarcoma removed from my left thigh on June 8, 2012. It was within the sartorious muscle, which was also removed. My original course of action was to be surgery followed by radiation. But my case was discussed at the cancer center's tumor board and due to the 20% round cell component, and other high risk for recurrence factors, I was referred to the oncologist, who is recommending heavy duty chemo (doxorubicin and ifosfamide, 4 cycles of 3 weeks each) starting ASAP. My research is inconclusive as to whether this would benefit and as I am cancer free at the moment I'm very confused as to the best course of action. I am going to Sloan-Kettering for an appt with Dr. Keohan for a second opinion and am very anxious to hear what is advised. Would appreciate any advice as to whether to do chemo and would like to hear from anyone who has experience with this chemo.. Thanks.

tooto11
Posts: 2
Joined: Feb 2014

HI Notalipoma,

Im not sure if you still check your posts.  I was wondering what the docs at Sloan Kettering advised you in terms of to chemo or not to chemo?

 

 

 

Overcomer09
Posts: 10
Joined: Jan 2009

I certainly can sympathise with you and understand and am myself going through another reacuurance of this type tumor/cancer . You can read my post to get more info .
GBY praying all goes well for you .

windcrest84
Posts: 1
Joined: Apr 2010

I also had an extremely large liposarcoma removed from my left thigh in May, 2006. My doctor at Yale, Dr. Dieter Lindskog, who is amazing, did not recommend any follow up treatments of radiation or chemo. However he did alert me that these types of tumors have a chance of recurring and required that I have an MRI every 6 months. Now 4 years later I have another tumor in the same area. This tumor is much smaller in size and I still cant feel it but it is noticeable on the MRI. I am having it removed next week in an outpatient setting. I do not know what the follow ups will consist of yet but I will do another post once I do.

tishbeck
Posts: 3
Joined: Apr 2010

I have had a spindle cell sarcoma removed from my left thigh three times over the last six years. I have been through chemo, radiation and brachy therapy (not sure how to spell brachy). Spindle cell sarcomas like to move to the lungs, so I get CT scans there. We are currently moving away from the CT scans, and will continue with xrays. I return every four months for check ups. My next on is this week. Good luck to you.

Lissa N Texas
Posts: 2
Joined: May 2010

I was diagnosed 2 weeks ago through a MRI. I have no insurance and been job hunting since I graduated from college May 2009. I haven't had a biopsy yet to confirm anything yet. The reason for that is probably the no insurance thing. So if anyone has any tips on finding financial assistance or a program I can apply for I would greatly appreciate it. I feel so lost right now on what to do or what I should be feeling right now. Any help would be appreciated!! Thanks.

cbalfour
Posts: 3
Joined: May 2010

If you find out of any type of assistance for this type of cancer please forwarded the info to me at conniebal4@yahoo.com. My mom does not have good insurance and because of that we are having a hard time finding a doctor that specialize in Liposarcoma to take her as a patient.

Thanks

Lissa N Texas
Posts: 2
Joined: May 2010

md anderson in houston has a sarcoma center. i'm trying to get my county's indigent health card so i can get a county doctor to refer me so i can get on their assistance program. you might call them and see if her insurance will do her any good there if not ask them what should you do next. also call the patient advocate foundation. they help find what's in your area for help. it just depends on your area. call 800-532-5274. american cancer society gave me alot of things to check out too. call them. they are very helpful

onhold
Posts: 24
Joined: Jun 2010

Lissa,
My husband has been dealing with liposarcoma for 11 years. If you are in Texas I cannot stress how highly we recommend MD Anderson's Sarcoma Center. I hope you can work out the insurance issue.
Another resource I recommend is ACOR: http://www.acor.org/. You should be able to get information from the "lipo group", from folks who have this specific cancer and have explored treatment options. They may have experience in the lack of insurance issue.
FYI: my husband has had surgeries, radiation, and chemo. We think they have been effective (at least in our case they seem to be). Educate yourself on this subject as much as you can. Good luck getting in to MD Anderson, we really appreciate their care!
Best of luck Lissa.

melanie45229
Posts: 1
Joined: Sep 2010

Hello everyone,

I am the mother of a 5 month old baby boy and have been diagnosed with a MLS in the back of my right calf, right below the back of my knee. I am just about to finish 25 treatments of radiation and will have surgery with wide margins about a month from now. The MD's want to have me do two to two and a half months of in-patient chemo four days out of seven. I have been doing research on this type of cancer (I have a doctorate) and I am finding that chemo is not thought to be helpful in this situation. What is the experience of any or all of you? I am very glad to have found this website. Thanks!

vicki125
Posts: 2
Joined: Mar 2010

Hi melanie45229,
I was treated for a liposarcoma of the right deltoid muscle this past winter, and would ask if the doctors you are seeing are experts in sarcoma? If not, you need to make a change to an oncologist who specializes in this area. I have learned that oncologists who do not specialize in sarcomas do not have the requisite knowledge to treat them, and will often recommend chemo which as you note is often not indicated. Please get a 2nd opinion.

jjb2497
Posts: 8
Joined: Sep 2010

I agree with the last post. When I went to an Oncologist that was not a specialist in Sarcoma she told me to do 18 weeks of chemo. But when I went to an Oncologist which specialized in Sarcoma she advised me not to do chemo at this time. I think it is always a good idea to get 2 opinions.

4Wade4Us
Posts: 1
Joined: Mar 2011

My husband was diagnosed with a pleomorphic differentiated sarcoma tumor in his gluteus maximus muscle. His surgery removed the tumor and whole muscle. He had 34 radiation treatments after healing from the surgery. No chemo. He got along quite well with the radiation. Only during the last two weeks and a couple of weeks afterward did he experience the "sunburn" and fatigue. His sarcoma came back in his lungs a year later, but not at the surgical site. Good luck.

DeniceH's picture
DeniceH
Posts: 9
Joined: Sep 2009

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.

krisp925
Posts: 5
Joined: Aug 2011

Hello,

First of all I want to congratulate you on 2 years clean!! I hope this email finds you still feeling good. I also have a tumor on the top of my left thigh. The MRI showed it as a possible lipoma. After much research I have found that Liposarcoma is often misdiagnosed as a lipoma. I also have a large mass in my left calf that has not had a MRI yet. I am concerned about this so I called University of Michigan Sarcoma Center. I faxed them my MRI report and they want to see me right away. I have an appointment on 8/12/11. I am curious about your symptoms, and/or, what your leg looked like. My thigh is swollen across the top of my thigh in almost a wide rectangular shape. The tumor in my calf is the size of a medium apple and is more pronounced when I flex my calf. You can feel it either way, it's just easier to see when the calf is flexed. I have also found another mass on my right leg above my knee in the same rectangular shape as my left thigh. Both of my thighs are swollen in those areas and puffy feeling. I have also had severe abdominal pain for the past few months which has gone from every few weeks to almost everyday. It was believed to be ovarian cysts up until recently. My Gynecologist wants to do exploratory surgery to see what is causing the problem because my external and internal ultrasounds only show fluid and nothing else. I have also lost my appetite and don't know if it's the pain, my nerves, or an actual symptom. Please let me know what you think from your experience and if you have had any similar symptoms. Thank you so much for anything information you can offer. I wish you the best and will keep praying that you you remain clean!!!

Kris

hamza1984
Posts: 3
Joined: Aug 2010

Dear, First of all I pray for your health. My mother is being infected with the same liposorcoma in the left thigh, we have been advised to operate her, we did the same and did post op chemio 4 cycles that badly effected her health, she is now 61 years old. After chemio we did ct and MRI and all reports were clear, after exact 2 months we have found a similar cist just some centimeters away but in between under legs where operation was not called at start and asked to do radiation, we did but still after that liposorcoma remains there with burned skin. Than we have been asked to operate it, we did it second time. Now Pet scan report after operation's 2 months later shows the last both places where operation held still have disease in there, also a small nodule showed there, we are now asked to do chemio again but we are really confused and worried. After second operation blood veins were not healed the way it should be and blood got thicker, now we are working on stabilizing the PTT NRI of her blood. After that we will go for chemio.

Liposorcoma as far as my research says we have to operate this every time it gets appear any where. Radiation and chemio just slows down its nature of being malignant, its not the cure. If your doc is asking for post op radiation than you can give it a try, wish you health and good luck. If you need to contact me further, you can email me at hbn1984@gmail.com

Regards,

Hamza

woollysmom
Posts: 1
Joined: Dec 2011

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

Easy2bme
Posts: 1
Joined: Feb 2012

Hi Steph,

The absolutely best advice I got was from a plastic surgeon who knew he could not take care of the massive tumor on my thigh, a tumor that the radiologist thought was a lipoma. He said look for an orthopedic surgeon who is also an orthopedic oncologist. A doctor with that kind of background, he felt, would have at least had a great deal of experience removing tumors. I am awaiting the results of surgery by a physician who met that criteria. He looked at the film I brought and examined my leg and felt it was more than likely I had a liposarcoma, not a lipoma. My thigh felt too hard for him to suggest that I had a lipoma. He has a strong feeling that I have cancer. Well differentiated liposarcomass, I guess, can look like lipomas on MRIs with contrast. I won't know until I go for my post-op visit what the pathologist found.

I don't know what your medical situation truly is but if you are having pain in your leg and there are growths there it does you no harm to go to someone who has a background in orthopedic oncology and orthopedic surgery even if your tumors are benign. You might need as skilled a surgeon as possible even if it is a lipoma and not a liposarcoma and someone with a lot of experience in removing tumors seems to be the right kind of doctor.

I wish you the best of luck and the best of health.

Phoenix108
Posts: 2
Joined: Mar 2012

I was misdaignosed with a hematoma. The nurse pracititioner even smashed it with her hand before ordering any tests. I first went in complaining that I had over extended my leg and had pain in the groin area. That was in Feb 2011. In April I got a second opinion, within the week I had my first MRI, the next week I was seeing a Surgeon and the week after the tumor was removed and getting biopsied. I was diagnosed in May. Luckily, the family doctor I saw (who I never saw before, it was pure luck because he was the only doctor who had an immediate openning) knew what he was looking at and the surgeon had experience with sarcomas.

Happy to report that I am now finished with my treatments and cancer free. Just had my port removed today. Remember, there is always hope!

I wish you the best with your results.

Rdavis5872
Posts: 1
Joined: Jun 2012

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??

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