Liposarcoma on the left thigh

13

Comments

  • krisp925
    krisp925 Member Posts: 5
    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.

    Help
    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
  • woollysmom
    woollysmom Member Posts: 1
    hamza1984 said:

    Liposorcoma
    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

    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
  • Easy2bme
    Easy2bme Member Posts: 1

    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

    Hi Steph,
    The absolutely

    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
    Phoenix108 Member Posts: 2
    Easy2bme said:

    Hi Steph,
    The absolutely

    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.

    I was misdiagnosed too.
    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.
  • monkeymoo
    monkeymoo Member Posts: 1
    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.

    I am so glad I have found
    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?
  • Rdavis5872
    Rdavis5872 Member Posts: 1
    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
    MAX63 Member Posts: 1

    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??

    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.
  • Notalipoma
    Notalipoma Member Posts: 1

    Don't do chemo
    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.

    Chemo for myxoid liposarcoma with round cell??
    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.
  • MKPLUS6
    MKPLUS6 Member Posts: 1
    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.

    Tumor on left thigh
    Hello, I was researching a problem I'm currently having and it brought your post up. After me searching the internet and doing a lot of reading your post finally sounded familiar to mine (the first line of your post). The reason I'm researching is because I'm currently without health insurance and it could be up to 2 more months before I get it. Anyway, I was wondering if you could tell me more about what yours felt like and what it looked like when you first discovered it? I too noticed a large bump on my left thigh (outer thigh). And just like you said it almost seems like it's an extra muscle. Mine does not hurt at this point in time. It has however got quite a bit larger since I discovered it a little over a month ago. It is now approx 5cm in diameter. Whenever I'm standing I can barely feel it and it can barely be seen but if I'm sitting, legs are bent, or especially when my legs are crossed it can be felt from every direction. You can also see it as it is very noticeable in these positions. It is not a perfect round spot but rather the skin looks swollen up around the entire thing. I wasn't too worried until my husband and I felt it the other day and it has gotten noticeably bigger in just a months time. Can you tell me what you felt & saw before you knew what it was? Thank you
  • Nana b
    Nana b Member Posts: 3,030 Member
    MKPLUS6 said:

    Tumor on left thigh
    Hello, I was researching a problem I'm currently having and it brought your post up. After me searching the internet and doing a lot of reading your post finally sounded familiar to mine (the first line of your post). The reason I'm researching is because I'm currently without health insurance and it could be up to 2 more months before I get it. Anyway, I was wondering if you could tell me more about what yours felt like and what it looked like when you first discovered it? I too noticed a large bump on my left thigh (outer thigh). And just like you said it almost seems like it's an extra muscle. Mine does not hurt at this point in time. It has however got quite a bit larger since I discovered it a little over a month ago. It is now approx 5cm in diameter. Whenever I'm standing I can barely feel it and it can barely be seen but if I'm sitting, legs are bent, or especially when my legs are crossed it can be felt from every direction. You can also see it as it is very noticeable in these positions. It is not a perfect round spot but rather the skin looks swollen up around the entire thing. I wasn't too worried until my husband and I felt it the other day and it has gotten noticeably bigger in just a months time. Can you tell me what you felt & saw before you knew what it was? Thank you

    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........
  • Bldalton
    Bldalton Member Posts: 3
    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........

    Liposarcoma (ALT) left thigh
    I am hoping that someone out there can help me. In 2010 I noticed a large swelling on my left thigh. I had been walking over 4 miles a day at a pretty good clip so I thought I had a swollen muscle. So by the end of 2010 I decided I had better have it looked at. I had an MRI and the radiologist said it was a lipoma. So I had surgery on December 22 2010 to remove the "lipoma" by a general surgeon. He told me the tumor was over 22 cm and deepp since he had to cut muscle to free the tumor. When I went back to the surgeon in Jan. 2011 he told me it was cancer and that he was setting me up with an Oncologist and a Onocology Surgeon since the margins were positive. I went to Indiana University in Indianapolis and the surgeon told me it was low grade but he was concerned by its size. He did a local wide excision (shaving muscles). He recommended radiation to ensure no further cells remained (insurance). I had 6,000 Rads of radiation. I was burnt to a crisp and it damaged my lymph nodes. Now I have Lymphodemia in my leg. I finished radiaion in May 2011. When I went for a followup CAT scan at IU in August 2011 and I had an 8 cm tumor close to my hip. In September 2011 he went in and "got all tumor he could see". He had to remove my Rectus Femoris and Satorius muscles. When the pathology came back I had positive margins deep (and quite a lot) and close margins superficially and laterally. He wanted me to have additional radiation and my Radiation Oncologist said no. So since I have had 2 MRIs with contrast and other than scar tissue and fluid nothing has been detected. I am nervous about these positive margins. Now my Oncologist Surgeon is on Indefinite Leave of Abscence. I really don't know where to turn. I am so nervous having this stuff in my leg. Can anyone out there provide me some guidance????
  • JeanDane
    JeanDane Member Posts: 2
    Tumor on left thigh, also

    2 years ago, I got this. I let it go 2 1/2 years before diagnosed. Had outpatient surgery.

    I had no post surgery meds., no chemo, no radiation.  It was a long tumor

    (maybe 5 inches). (Tumor became infected + bled before the surgery.)

    Since surgery I have a little spotty leg numbness and a little "hand stupidity."

    I work, drive and do everything as if I never had this thing.

    I am 58 yrs. female.  Today, I still am taking no meds of any kind.

    I am doing great.

  • apage4alex
    apage4alex Member Posts: 6

    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

    my faith has kept me going

    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

     

  • apage4alex
    apage4alex Member Posts: 6
    MKPLUS6 said:

    Tumor on left thigh
    Hello, I was researching a problem I'm currently having and it brought your post up. After me searching the internet and doing a lot of reading your post finally sounded familiar to mine (the first line of your post). The reason I'm researching is because I'm currently without health insurance and it could be up to 2 more months before I get it. Anyway, I was wondering if you could tell me more about what yours felt like and what it looked like when you first discovered it? I too noticed a large bump on my left thigh (outer thigh). And just like you said it almost seems like it's an extra muscle. Mine does not hurt at this point in time. It has however got quite a bit larger since I discovered it a little over a month ago. It is now approx 5cm in diameter. Whenever I'm standing I can barely feel it and it can barely be seen but if I'm sitting, legs are bent, or especially when my legs are crossed it can be felt from every direction. You can also see it as it is very noticeable in these positions. It is not a perfect round spot but rather the skin looks swollen up around the entire thing. I wasn't too worried until my husband and I felt it the other day and it has gotten noticeably bigger in just a months time. Can you tell me what you felt & saw before you knew what it was? Thank you

    no pain

    mine was in left buttocks with no pain my wife noticed it i let months go by before seeing a dr my storys on this page i have maine care my operation and treatment was free as i volunteered for a new chemo treatment i had it removed and was cancer free for over 17 years then it kept returning in the same leg I do encourage you to get treatment now as it only gets bigger

    I go to mass general in boston i still have my leg and can walk but have swelling and numbness 

     

    hope all goes well for you and your family

  • tooto11
    tooto11 Member Posts: 2
    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

    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

     

  • tooto11
    tooto11 Member Posts: 2

    Chemo for myxoid liposarcoma with round cell??
    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.

    Chemo for myxoid liposarcoma with round cell?

    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?

     

     

     

  • Myxoid1
    Myxoid1 Member Posts: 1
    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

     

    Myxoid liposarcoma in left thigh more than 10 years ago

    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.

  • Jassyjo
    Jassyjo Member Posts: 1
    Diagnosis

    Don't get me wrong... I'm not wishing for sarcoma; it's just that I've read so many stories about misdiagnosed left thigh tumors.  It's unnerving!  I have a lump on my left thigh that grew to about the size of a goose egg, very quickly.  It pains like getting stung by bees and lasts several minutes.  It also seems to cause veins, behind the knee to ache.  The second doctor, I asked, had it visualized (right now, can't recall if it was x-ray or ultrasound) and I was told not to worry.  How does one really know if the diagnosis is correct?  I'd hate to delay help if it was wrong.  I have HMO coverage.  Can anyone tell me when to be concerned?

  • lunartic
    lunartic Member Posts: 1
    If anyone is still reading this thread....

    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.

  • Poshnosh
    Poshnosh Member Posts: 1
    edited January 2018 #61
    MKPLUS6 said:

    Tumor on left thigh
    Hello, I was researching a problem I'm currently having and it brought your post up. After me searching the internet and doing a lot of reading your post finally sounded familiar to mine (the first line of your post). The reason I'm researching is because I'm currently without health insurance and it could be up to 2 more months before I get it. Anyway, I was wondering if you could tell me more about what yours felt like and what it looked like when you first discovered it? I too noticed a large bump on my left thigh (outer thigh). And just like you said it almost seems like it's an extra muscle. Mine does not hurt at this point in time. It has however got quite a bit larger since I discovered it a little over a month ago. It is now approx 5cm in diameter. Whenever I'm standing I can barely feel it and it can barely be seen but if I'm sitting, legs are bent, or especially when my legs are crossed it can be felt from every direction. You can also see it as it is very noticeable in these positions. It is not a perfect round spot but rather the skin looks swollen up around the entire thing. I wasn't too worried until my husband and I felt it the other day and it has gotten noticeably bigger in just a months time. Can you tell me what you felt & saw before you knew what it was? Thank you

    Thigh lump

    Hi did you discover what your lump was. I have exact symptoms