Liposarcoma on the left thigh

Beesley said:

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.

liposarcoma
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!

reneesings said:

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.

Liposarcoma
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

cbalfour said:

Help
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

help
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

Overcomer09 said:

Update ??
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 .

UPDATE :
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 .

Overcomer09 said:

UPDATE :
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 .

Hello Overcomer09
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.

onhold said:

lipo help
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.

I have a MLS and am thinking about not doing chemo
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!

melanie45229 said:

I have a MLS and am thinking about not doing chemo
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!

liposarcoma
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.

melanie45229 said:

I have a MLS and am thinking about not doing chemo
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!

Sarcoma experts
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 said:

radiation after surgery
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.

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.

turner4 said:

Need good advice on Lipoma vs. Liposarcoma
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.

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