Liposarcoma on the left thigh

Yiannis
Yiannis Member Posts: 1
edited March 2014 in Sarcoma #1
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
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  • Mike99
    Mike99 Member Posts: 22
    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
    reneesings Member Posts: 2
    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
    4myboys Member Posts: 1

    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.

    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
  • gina1952
    gina1952 Member Posts: 1

    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.

    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
    Femi Member Posts: 3
    gina1952 said:

    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.

    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.
  • danielac
    danielac Member Posts: 2
    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
  • friscov2
    friscov2 Member Posts: 4

    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.

    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.
  • Overcomer09
    Overcomer09 Member Posts: 10
    gina1952 said:

    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.

    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 .
  • tompilot
    tompilot Member Posts: 1
    danielac said:

    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

    Liposarcoma on the left thigh
    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
  • 1soonerfan
    1soonerfan Member Posts: 1
    HELP
    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
    mernp50 Member Posts: 2

    HELP
    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

    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.
  • jbchalhoub
    jbchalhoub Member Posts: 1
    danielac said:

    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

    Sarcoma of the right hip
    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.
  • This comment has been removed by the Moderator
  • Alexlimeres
    Alexlimeres Member Posts: 1
    mernp50 said:

    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.

    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.
  • Gini61
    Gini61 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.

    Lipoma or Liposarcoma
    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
    DeniceH Member Posts: 11
    Gini61 said:

    Lipoma or Liposarcoma
    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.

    To Chemo or Not to Chemo...
    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
    Beesley Member Posts: 2
    Gini61 said:

    Lipoma or Liposarcoma
    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.

    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.
  • Beesley
    Beesley Member Posts: 2
    DeniceH said:

    To Chemo or Not to Chemo...
    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

    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.
  • windcrest84
    windcrest84 Member Posts: 1
    liposarcoma
    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.