Myxoid liposarcoma in right thigh

2police
2police Member Posts: 6
edited March 2014 in Sarcoma #1
Hello,
My husband was diagnosed with myxoid liposarcoma on September 10, 2004. He travels alot, and found a lump on his thigh (size of a small lemon) when he was in indonesia on July 4th. Upon returning, he showed it to me, and I made an appointment the following day for him to see the doctor. The doctor refered him to a specialist (sports & medicine). They did several tests, to include MRI's, CT, X-ray, ultra sound, followed by a biopsy. The biopsy came back as a benign myxoma. My husband was given the option to remove it or leave it. Looking back, thank God he made the decision to remove it. As we now know, nothing is 100%, and we were told that after two biopsies, this was indeed a malignant tumor. My husband is now being seen by a wonderful team at John's Hopkin's Hospital in Baltimore. He had surgery on October 8th, to remove the margin (very wide excision). We were told two weeks ago, that the results of an extensive biopsy showed no sign of residual liposarcoma. He is still recovering from the surgery, and is scheduled to receive 35 rounds of radiation in a few weeks. We have also met twice with an Oncologist, yesterday being the second time. However, that meeting did not go well. The first meeting he told us that chemo really has not shown to be effective for this type of cancer. He gave us some figures to think about, and told us to come back after the surgery to discuss our options. Yesterday we went and saw him again, only to find out the the figures have changed since we last met. The first time we met, he told us that this type of cancer has a 20-30% chance of going elswhere. Yesterday that number was increased from 20-30% to 30-40%. This really disturbed me. He also told us that if my husband did not do it now, and it returned in the future, basically that would not be a good sentence. He told us at that point there would be no hope, and they would just try and buy time or so to speak. Could he have been just a little more negative!!!! I am very upset with this doctor, and have decided to get another opinion. We have two small children, and are in our mid 30's. Never did I ever imagine we would see something like this. I am very scared and am having a difficult time dealing with all of this. I would like to chat with someone who has been diagnosed with this type of cancer. Did you opt for radiation only? if so, how long has it been? has anything else showed up? As you can see, I am deeply lost. Mike is my best freind, and I just can't imagine this journey without him. Any information would be greatly appreciated.
Rhonda
spouse-diagnosed with myxoid liposarcoma in back of right thigh, stage 2 (chemo doctor said 2 or 3 does not make a difference, so you might as well say stage 3!!!) Located right under the skin (not deep) which they said was very rare.
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Comments

  • vickin
    vickin Member Posts: 2
    #2
    I was diagnosed with liposarcoma in 1999. I too talked with 3 different doctors and was told that cheom for this type of cancer hasn't been studied because it is a rare form of cancer. I was told chemo probably wouldn't help that much. After talking with my surgeon again and after 2 months of agonizing over what to do, I Opted not to have any chemo. It has been 5 years this month since my diagnoses and I've only had a small basal carcinoma on my neck which has nothing to do with the sarcoma. I am 52 years old and healthy. My doctor told me I'm not out of the woods yet, but usually the sarcoma shows up by now if its going to. I also know of one other person with this type of cancer that had it at age 18 and she is in her forties now and is very healthy. There is hope. I know this is a very difficult time for both of you and with lots of prayer you will make the right choice. My best to you!!
  • 2police
    2police Member Posts: 6
    #3
    vickin said:

    I was diagnosed with liposarcoma in 1999. I too talked with 3 different doctors and was told that cheom for this type of cancer hasn't been studied because it is a rare form of cancer. I was told chemo probably wouldn't help that much. After talking with my surgeon again and after 2 months of agonizing over what to do, I Opted not to have any chemo. It has been 5 years this month since my diagnoses and I've only had a small basal carcinoma on my neck which has nothing to do with the sarcoma. I am 52 years old and healthy. My doctor told me I'm not out of the woods yet, but usually the sarcoma shows up by now if its going to. I also know of one other person with this type of cancer that had it at age 18 and she is in her forties now and is very healthy. There is hope. I know this is a very difficult time for both of you and with lots of prayer you will make the right choice. My best to you!!

    Thanks so much for your reply!
    I do have a couple of questions if you don't mind sharing. What location was your sarcoma in? was it diagnosed as a myxoid liposarcoma? Was it a large tumor/deep? My husbands tumor measured 7.7 x 6.5 x 2.2cm. They said it was superficial, and graded it at 1-2 of 3 or 2 of 4, not sure what all this means. It has been very overwhelming with all the decisions we have to make. This whole chemo thing is really scary. The Oncologist said they would put him on MAID?? this is the only one they would recommend for this type of sarcoma. But once again, there are no gurantees that this will even work. It seems like so much to go through when the studies done, have not even shown if it works. It think they gave a percent of 20% out of 100 people will be cured. Did you have any radiation for this? if so, how many treatments did they recommend? My husband has been told it would be 7 weeks M-F. What state were you treated in? did you see a specialist who dealt only with sarcomas? My husband is currently being seen at John's Hopkin's Hospital (we reside in Northern Virginia, and drive 2 hours to each appointment). Sorry for all the questions :-) I appreciate any info you can provide.
    Rhonda
  • dyana
    dyana Member Posts: 15
    #4
    sorry to hear about your husband's lipo. it is indeed a scary ordeal to go thru. my daughter's was in her left thigh and was deep behind the femor muscle. they took the femor muscle along with nerves. hers was also myxoid-round cell type 2. it was 6lbs. she then had 7 weeks radiation. that was 9-2003. she had surgery to insert the rod 10-27-2004. her femor was destroyed by the radiation. the rod is to insure she wouldn't break it. along with the cancer shehas no insurance so that is another monster. we are lucky we love and trust her doctors completely. it has been very painful and she lives with daily pain due to nerve damage. she has mri's to check for recur but so far none . thank god!! please educate yourself as much as you can on liposarcoma but DO NOT listen to statistics. he is not one! just stay strong (easy for me to say)
    it consumed me. there is a web site called ACOR that is very informative. you must join the group but it is very easy. the people and information are wonderful. i will think of you and your family often. please email me at dyana123_2000@yahoo.com anytime. take care and stay strong.hugs dyana
  • dyana
    dyana Member Posts: 15
    #5
    woops- chemo was not discussed. if it comes back she can not have radiation again, then chemo might be in the picture. we will think about that if it happens.
  • almo
    almo Member Posts: 3
    #6
    Just found your posting today. I just returned to my surgeon after a wide excision of a pleomorphic liposarcoma in the fatty tissue of my left inner thigh. It was there for almost a year before I insisted that it be removed. The first surgeon performed an excisional biopsy and removed the tumor which was about the size of my thumb. After the pathology report revealed the cancer, I went to the James Cancer Center at Ohio State where Dr. Gary Bos, the head of the department did a wide excision (about the size of two hands end to end and 3cm thick) Since the second pathology report came back with no finding of additional cancer, we are going to go to 3 month checkups for metastatic lung tumors (I'm clean there now as well). He doesn't think that any radiation would have benefits that would justify the damage and tells me that no chemotherapy has been shown to be truly effective. I'm recovering from the surgery well and plan to keep living until I'm old. The Doc says that if I make it past 2 years with no recurrance, I'm probably home free. Get a second opinion and look this sarcoma up. Educate yourself, it really helps when you see these guys if you have intelligent questions to ask them.
  • 2police
    2police Member Posts: 6
    #7
    almo said:

    Just found your posting today. I just returned to my surgeon after a wide excision of a pleomorphic liposarcoma in the fatty tissue of my left inner thigh. It was there for almost a year before I insisted that it be removed. The first surgeon performed an excisional biopsy and removed the tumor which was about the size of my thumb. After the pathology report revealed the cancer, I went to the James Cancer Center at Ohio State where Dr. Gary Bos, the head of the department did a wide excision (about the size of two hands end to end and 3cm thick) Since the second pathology report came back with no finding of additional cancer, we are going to go to 3 month checkups for metastatic lung tumors (I'm clean there now as well). He doesn't think that any radiation would have benefits that would justify the damage and tells me that no chemotherapy has been shown to be truly effective. I'm recovering from the surgery well and plan to keep living until I'm old. The Doc says that if I make it past 2 years with no recurrance, I'm probably home free. Get a second opinion and look this sarcoma up. Educate yourself, it really helps when you see these guys if you have intelligent questions to ask them.

    Hi Dayna & Almo

    Thanks for your reply. I hope that all is going well with your daughter, and will pray that she has a full recovery from the surgery. My heart goes out to her and the family. She is one lucky girl to have such a courageous Mother. Our family has also been blessed with an amazing Mother-in law. I honestly could not do this without her.

    Almo- Hope all is going well for you. My husband is now back at work, and his leg seems to be getting better each day. The doctors also did a wide excision. Right now they are just waiting until the excision heals, and then they will start 7 weeks of radiation. May I ask what stage or grade your tumor was? was it deep? My husbands tumor was superficial, but that still does not mean anything as the size of it was large. I am just curious, as we are still unsure about the whole chemo thing. Look forward to hearing from you.

    Rhonda
  • adeselle
    adeselle Member Posts: 3
    #8
    Hello,
    I was diagnosed with a liposarcome in my right thigh in April. I had surgery in May to remove it. (I am 32 years old and have two small children as well) I went thorugh 36 rounds of radiation. I was also told by my orthopedic oncologist surgeon (he has been in the biz for 25 years and trained at Sloan Kettering) that there is no research showing that Chemo helps this type of sarcoma. I know mine was considered low grade even though less than 10% of the cells were round cell (hence requiring the radiation). I also sought another opinion from the same kind of doctor who said basically the same thing as my doctor except that he would offer Chemo. The radiaiton oncologist also agreed with my Dr. I have chosen not to do that. By doing the radiation my chances of it coming back (mainly into the lungs, this is where this type of cancer likes to go) was less than 20%. those are pretty good odds. I have remained positive ( I have my bad days most definetly) and believe in the power of the Almighty. I KNOW how hard this was and still is on my husband so I know what you are going through. Let me know if you ever want to talk. Take care and let me now how things are going. Anna
  • 2police
    2police Member Posts: 6
    #9
    adeselle said:

    Hello,
    I was diagnosed with a liposarcome in my right thigh in April. I had surgery in May to remove it. (I am 32 years old and have two small children as well) I went thorugh 36 rounds of radiation. I was also told by my orthopedic oncologist surgeon (he has been in the biz for 25 years and trained at Sloan Kettering) that there is no research showing that Chemo helps this type of sarcoma. I know mine was considered low grade even though less than 10% of the cells were round cell (hence requiring the radiation). I also sought another opinion from the same kind of doctor who said basically the same thing as my doctor except that he would offer Chemo. The radiaiton oncologist also agreed with my Dr. I have chosen not to do that. By doing the radiation my chances of it coming back (mainly into the lungs, this is where this type of cancer likes to go) was less than 20%. those are pretty good odds. I have remained positive ( I have my bad days most definetly) and believe in the power of the Almighty. I KNOW how hard this was and still is on my husband so I know what you are going through. Let me know if you ever want to talk. Take care and let me now how things are going. Anna

    Hello Anna.

    Thanks for you reply. I am glad to hear that things are going good for you. Do you have to have regular scans? (re: every three months) I am very confused, because I have read posts where people say that they were diagnosed with "low grade mixoid liposarcoma", but when I spoke with the pathologist at John's Hopkins, he told me that myxoid liposarcoma is always considered to be a stage/grade 2. For some reason I had called him to discuss the pathology report from the second surgery, and that is when the results of the first came up. Did you have just the one surgery? did they ever do a second to clear the margin? As you can see, I have a ton of questions, and probably always will. I will pray for you and your family. As a spouse, I feel so helpless at times. It is hard not to be able to help take this away. As a Mom, I cannot imagine how hard this has been on you. How old are your children? do they know anything? We explained the situation to our girls (kid terms that is) as best we could. We had to say something, because there were only so many times I could shut the door and cry. They could sense that something was wrong. It broke my heart to sit there with my husband and tell them. Of course they are kids, and really had no idea what we were talking about. Ever since we found out about my husband, we have always wanted the girls to know as little as possible. We want them to remain kids for as long as they can. We also figure, that we have not been given a sentence, so we are going to live our lives. Sure our journey is far from over, but I have learned to accept this, and place it into God's hands. This is all I can do. We have been married for 10 years, and it litterally takes my breath away to think of this life without him. Like you, I also have good days, and not so good days. I have spent many sleepless nights trying to make sense of this all. But I quickly learned that life was ticking away. I guess one never knows when there time will be, we just always assume/hope that it will be later rather than sooner. If you ever would like to chat, my email address is RMRMDR1@AOL.COM
    Will keep you in our thoughts and prayers.
    Rhonda
  • Cgrenfield
    Cgrenfield Member Posts: 2
    #10
    2police said:

    Hello Anna.

    Thanks for you reply. I am glad to hear that things are going good for you. Do you have to have regular scans? (re: every three months) I am very confused, because I have read posts where people say that they were diagnosed with "low grade mixoid liposarcoma", but when I spoke with the pathologist at John's Hopkins, he told me that myxoid liposarcoma is always considered to be a stage/grade 2. For some reason I had called him to discuss the pathology report from the second surgery, and that is when the results of the first came up. Did you have just the one surgery? did they ever do a second to clear the margin? As you can see, I have a ton of questions, and probably always will. I will pray for you and your family. As a spouse, I feel so helpless at times. It is hard not to be able to help take this away. As a Mom, I cannot imagine how hard this has been on you. How old are your children? do they know anything? We explained the situation to our girls (kid terms that is) as best we could. We had to say something, because there were only so many times I could shut the door and cry. They could sense that something was wrong. It broke my heart to sit there with my husband and tell them. Of course they are kids, and really had no idea what we were talking about. Ever since we found out about my husband, we have always wanted the girls to know as little as possible. We want them to remain kids for as long as they can. We also figure, that we have not been given a sentence, so we are going to live our lives. Sure our journey is far from over, but I have learned to accept this, and place it into God's hands. This is all I can do. We have been married for 10 years, and it litterally takes my breath away to think of this life without him. Like you, I also have good days, and not so good days. I have spent many sleepless nights trying to make sense of this all. But I quickly learned that life was ticking away. I guess one never knows when there time will be, we just always assume/hope that it will be later rather than sooner. If you ever would like to chat, my email address is RMRMDR1@AOL.COM
    Will keep you in our thoughts and prayers.
    Rhonda

    I am a 46 yr. old mother of 4 children and have a myxoid liposarcoma in the area just inner to my left knee.It is 5cmX5cmX8cm. It is deep and involves ligaments etc. of knee. My orthopedic oncologist and medical oncologist both agreed that in my case, I needed to have chemo (3 courses)to try and shrink the tumor before excision so that i have a better chance of mobility of my knee. I will have the radium implants at the time of surgery for I think 5 days of radiation directly to the site. Not sure if I will need more chemo after the surgery. I am trying to take one day at a time. My 1st chemo was 3 days long and I was hospitalized.I came home on Thanksgiving Day. I recieved ifosfomide and adriamycin. Both are pretty toxic. In fact, i am 1 week and 2 days post chemo and my hair is beginning to come out. That was a huge blow to me this a.m. in the shower. I feel that my doctor's have chosen the best tx. for me because of where the sarcoma is and the fact that if they don't get it 100% this time around, the next time may not be so treatable.I am recieving tx. at University Hospital in Syracuse, they have a good reputation. I live about 25 miles away so travel back and forth is not an issue.It's a tough time of year to feel so bad. I also had to take a leave from my job. I am an R.N. at a surgery center. Not to mention that I had to stop being a Brownie Leader because of decreased resistance to germs.
  • RitaL
    RitaL Member Posts: 2
    #11
    2police said:

    Hello Anna.

    Thanks for you reply. I am glad to hear that things are going good for you. Do you have to have regular scans? (re: every three months) I am very confused, because I have read posts where people say that they were diagnosed with "low grade mixoid liposarcoma", but when I spoke with the pathologist at John's Hopkins, he told me that myxoid liposarcoma is always considered to be a stage/grade 2. For some reason I had called him to discuss the pathology report from the second surgery, and that is when the results of the first came up. Did you have just the one surgery? did they ever do a second to clear the margin? As you can see, I have a ton of questions, and probably always will. I will pray for you and your family. As a spouse, I feel so helpless at times. It is hard not to be able to help take this away. As a Mom, I cannot imagine how hard this has been on you. How old are your children? do they know anything? We explained the situation to our girls (kid terms that is) as best we could. We had to say something, because there were only so many times I could shut the door and cry. They could sense that something was wrong. It broke my heart to sit there with my husband and tell them. Of course they are kids, and really had no idea what we were talking about. Ever since we found out about my husband, we have always wanted the girls to know as little as possible. We want them to remain kids for as long as they can. We also figure, that we have not been given a sentence, so we are going to live our lives. Sure our journey is far from over, but I have learned to accept this, and place it into God's hands. This is all I can do. We have been married for 10 years, and it litterally takes my breath away to think of this life without him. Like you, I also have good days, and not so good days. I have spent many sleepless nights trying to make sense of this all. But I quickly learned that life was ticking away. I guess one never knows when there time will be, we just always assume/hope that it will be later rather than sooner. If you ever would like to chat, my email address is RMRMDR1@AOL.COM
    Will keep you in our thoughts and prayers.
    Rhonda

    Rhonda, I was diagnosed with a low grade myxoid liposarcoma in the right thigh in February, 2004. On 2/10/04 my vastus lateralis and parts of two other muscles were removed at Stanford Univ. Med. Ctr. I had a post-surgical MRI in July and it did not show any residual cancer. On 12/3/04 the surgeon checked my unstable knee and the incision. He said that there isn't any way to fix my knee because so much was removed during surgery (muscle and ligaments). Now I am working harder to strengthen the remaining muscles. My tumor was deep in the muscle. The pathology report stated that the tumor was running throughout the entire muscle. Originally I was diagnosed with a lipoma (7/02). At that time the tumor was about the size of my fist. I had not noticed the lump because I was totally focused on my mother who was very ill (she passed away on 3/17/03). In November, 2003 I noticed that the lump had grown and it was causing me considerable pain when I walked more than 20 feet. My doctor ordered an MRI and I was referred to an orthepedic surgeon who referred me to Dr. David Mohler at Stanford. Dr. Mohler is an Orthopedic Oncologist Surgeon.

    I will keep you, your husband, and your family in my special thoughts and prayers.

    Please contact me if you have any questions.
    Rita
  • 2police
    2police Member Posts: 6
    #12
    Cgrenfield said:

    I am a 46 yr. old mother of 4 children and have a myxoid liposarcoma in the area just inner to my left knee.It is 5cmX5cmX8cm. It is deep and involves ligaments etc. of knee. My orthopedic oncologist and medical oncologist both agreed that in my case, I needed to have chemo (3 courses)to try and shrink the tumor before excision so that i have a better chance of mobility of my knee. I will have the radium implants at the time of surgery for I think 5 days of radiation directly to the site. Not sure if I will need more chemo after the surgery. I am trying to take one day at a time. My 1st chemo was 3 days long and I was hospitalized.I came home on Thanksgiving Day. I recieved ifosfomide and adriamycin. Both are pretty toxic. In fact, i am 1 week and 2 days post chemo and my hair is beginning to come out. That was a huge blow to me this a.m. in the shower. I feel that my doctor's have chosen the best tx. for me because of where the sarcoma is and the fact that if they don't get it 100% this time around, the next time may not be so treatable.I am recieving tx. at University Hospital in Syracuse, they have a good reputation. I live about 25 miles away so travel back and forth is not an issue.It's a tough time of year to feel so bad. I also had to take a leave from my job. I am an R.N. at a surgery center. Not to mention that I had to stop being a Brownie Leader because of decreased resistance to germs.

    Hi,

    Thanks so much for sharing your information. I have sent you a long E-mail. Hope you got it :-)

    Look forward to hearing from you.
    Rhonda
  • vickie50
    vickie50 Member Posts: 1
    #13
    Hello Rhonda,

    I was diagnosed on October 13, 2004 with myxoid liposarcoma in my right thigh. After insisting with my primary doctor that I needed a referal to a specialist becuase the area was getting larger. After the referal to a orthopedic surgeon specializing in oncology it was diagnosed that it was liposarcoma and very large. I had surgery on October 25th and I have just fininshed 30 rounds of radiation. My oncologist was on the fence at first about any sort of chemo but has changed his mind. I begin chemo this next week. (four rounds) One week on and two/three weeks off for the immune system to come back. The size of my turmor was 11.5 cm wide, 10.5 cm deep and 20.3cm long.
    The surgeon saved my cyatic nerve and I am able to walk. I would welcome anyone to talk to me about recovery. I have tried many sources to discuss this type of cancer and this network was the only one that I found had a discussion board for others like me dealing with this type of cancer.
  • primrose
    primrose Member Posts: 3
    #14
    vickie50 said:

    Hello Rhonda,

    I was diagnosed on October 13, 2004 with myxoid liposarcoma in my right thigh. After insisting with my primary doctor that I needed a referal to a specialist becuase the area was getting larger. After the referal to a orthopedic surgeon specializing in oncology it was diagnosed that it was liposarcoma and very large. I had surgery on October 25th and I have just fininshed 30 rounds of radiation. My oncologist was on the fence at first about any sort of chemo but has changed his mind. I begin chemo this next week. (four rounds) One week on and two/three weeks off for the immune system to come back. The size of my turmor was 11.5 cm wide, 10.5 cm deep and 20.3cm long.
    The surgeon saved my cyatic nerve and I am able to walk. I would welcome anyone to talk to me about recovery. I have tried many sources to discuss this type of cancer and this network was the only one that I found had a discussion board for others like me dealing with this type of cancer.

    I was diagnosed with a mixoid liposarcoma in my right thigh in Nov 1999. I just had my 5 year checkup a few months ago and got the good news: no metastases, no recurrences. I was operated on (the entire semi-membranosous was removed - the tumor was 11 x 7 x5 cm) and received radiation. I was also told that chemo hadn't been shown to be successful and the doctor (at Mt. Sinai in Baltimore) felt the radiation was important because the tumor was large and the margins small (1 mm at one point). But still - I'm alive and kicking, so don't give up, folks!

    I did have a very bad reaction to the radiation and have suffered from lymphedema and radiation fibrosis ever since. AFter years of searching for solutions, I found a doctor in Paris, Dr. Slyvia Delanian, who specializes in treating radiation fibrosis, using a combination of pentoxiflyllin, vitamin E, Bonefos and prednisone. I tried the first two for three years, and it really helped. I just started on the second two (while continuing on the first two.) For further information, either contact me or just type "treatment radiation fibrosis" into google. I wrote to her and she agreed to see me. It was wonderful to go to a doctor who specialized in treating radiation damage and not one who keeps telling me how grateful I should be to be alive (which I am, of course, but what has that got to do with anything?). I should say that I live in Germany, although I am an American. I just happened to be in the US the year it was diagnosed and treated.

    In addition, I get manual lymph drainage (a very gentle massage to get the lymph flowing) Any of you who have lymphedema should try it if there is anyone in your area that does it (preferably covered by health insurance!)

    Also, if you find it difficult to sit because the radiation fibrosis hardens the tissue on the back of your leg, try using a wheelchair cushion. There are some that allow you to adjust the amount of pressure. I even saw an inflatable one I could take along when I go out.
  • ivo1
    ivo1 Member Posts: 1
    #15
    My father was diagnosed with liposarcoma 1 year ago. He had 2 surgery, and now he don't have metastases now. But the doctor is pessimistic because this type of cancer is very rare and the chemoterapy can't stop this monster. I am desperate and I don't know what to do. I don't know how long my father will live ...
  • leonardlake
    leonardlake Member Posts: 1
    #16
    In February of 2003 I discovered a sarcoma in my right thigh only mine was only about the size of a quarter. After three surgeries to get a good margin I underwent the radiation treatment you described of 33 radiation treatments. I have been cancer free since then with monitoring by MRI and chest x-rays. Unfortunately the radiation covered a large enough portion of my thigh to cause radiation fibrosis and secondary lymphedema. I have to wear compression stockings and a compression sleeve at night to manage the lymphedema. I have become much more health conscious and started exercising 3-4 times per week. I am thankful that chemotherapy was not necessary.
  • lebtuckygal
    lebtuckygal Member Posts: 1
    #17
    Rhonda. This is the first time I've used this site but I connected with your story as my husband was a healthy 31 yr old and was diagnosed with myxoid liposarcoma in his groin area. He underwent two surgeries in 1994. Had a reoccurence in his abdomen in 1997 and again in 2003, 2004 and this past Friday we have been told of yet another new tumor in the lymph nodes of his left leg. Unfortunately, if you read through info on sarcoma it is a "monster". He has undergone radiation a couple of times,but as you can see it has not helped. We too have been told chemo is not effective and we too have been told all we can do is "buy time". We live in Indiana and are on our way to MD Anderson in Texas for his upcoming surgery. Our doctors here in Indinapolis have all but given up on trying to contain it. My husband is strong willed and has a wonderful outlook, he just keeps on going. I try to keep a stiff upper lip and stay positive. We have battled this for 11 out of our 14 years of marriage. Stay strong, Love Him, Live Everyday to it's fullest, and PRAY! If you need to talk or have questions I understand. I'll keep your family in my prayers. Anita
  • builderman
    builderman Member Posts: 1
    #18
    primrose said:

    I was diagnosed with a mixoid liposarcoma in my right thigh in Nov 1999. I just had my 5 year checkup a few months ago and got the good news: no metastases, no recurrences. I was operated on (the entire semi-membranosous was removed - the tumor was 11 x 7 x5 cm) and received radiation. I was also told that chemo hadn't been shown to be successful and the doctor (at Mt. Sinai in Baltimore) felt the radiation was important because the tumor was large and the margins small (1 mm at one point). But still - I'm alive and kicking, so don't give up, folks!

    I did have a very bad reaction to the radiation and have suffered from lymphedema and radiation fibrosis ever since. AFter years of searching for solutions, I found a doctor in Paris, Dr. Slyvia Delanian, who specializes in treating radiation fibrosis, using a combination of pentoxiflyllin, vitamin E, Bonefos and prednisone. I tried the first two for three years, and it really helped. I just started on the second two (while continuing on the first two.) For further information, either contact me or just type "treatment radiation fibrosis" into google. I wrote to her and she agreed to see me. It was wonderful to go to a doctor who specialized in treating radiation damage and not one who keeps telling me how grateful I should be to be alive (which I am, of course, but what has that got to do with anything?). I should say that I live in Germany, although I am an American. I just happened to be in the US the year it was diagnosed and treated.

    In addition, I get manual lymph drainage (a very gentle massage to get the lymph flowing) Any of you who have lymphedema should try it if there is anyone in your area that does it (preferably covered by health insurance!)

    Also, if you find it difficult to sit because the radiation fibrosis hardens the tissue on the back of your leg, try using a wheelchair cushion. There are some that allow you to adjust the amount of pressure. I even saw an inflatable one I could take along when I go out.

    Hi
    I have just been told My 11 yr old girl as liposarcoma after finding a lump on her leg and it being removed, We have to go and see a Child speciliist soon but what can we expect.
  • ShariH
    ShariH Member Posts: 1
    #19
    RitaL said:

    Rhonda, I was diagnosed with a low grade myxoid liposarcoma in the right thigh in February, 2004. On 2/10/04 my vastus lateralis and parts of two other muscles were removed at Stanford Univ. Med. Ctr. I had a post-surgical MRI in July and it did not show any residual cancer. On 12/3/04 the surgeon checked my unstable knee and the incision. He said that there isn't any way to fix my knee because so much was removed during surgery (muscle and ligaments). Now I am working harder to strengthen the remaining muscles. My tumor was deep in the muscle. The pathology report stated that the tumor was running throughout the entire muscle. Originally I was diagnosed with a lipoma (7/02). At that time the tumor was about the size of my fist. I had not noticed the lump because I was totally focused on my mother who was very ill (she passed away on 3/17/03). In November, 2003 I noticed that the lump had grown and it was causing me considerable pain when I walked more than 20 feet. My doctor ordered an MRI and I was referred to an orthepedic surgeon who referred me to Dr. David Mohler at Stanford. Dr. Mohler is an Orthopedic Oncologist Surgeon.

    I will keep you, your husband, and your family in my special thoughts and prayers.

    Please contact me if you have any questions.
    Rita

    Hi, I just had surgery at Stanford with Dr Moehler two weeks ago for Mixoid liposarcoma in my R thigh. I am just learning about the disease and options, they are recommending radiation. How are you doing now? What kind of treatment did you have? Do you have confidence in Dr Mohler? Thank you for your response.
  • maryfrancis3
    maryfrancis3 Member Posts: 1
    #20
    ShariH said:

    Hi, I just had surgery at Stanford with Dr Moehler two weeks ago for Mixoid liposarcoma in my R thigh. I am just learning about the disease and options, they are recommending radiation. How are you doing now? What kind of treatment did you have? Do you have confidence in Dr Mohler? Thank you for your response.

    I am in Australia so I cant comment on Dr Moehler, but I wish you luck with your outcome.

    My husband was diagnosed with Myxoid Liposarcoma in June 2006 in the right thigh also. His was 13 inches (33cm) in length and over 8 inches deep. After 5 weeks and 2 days of radiotherapy 5 days a week then 6 weeks recovery time, limb sparing surgery was done by Professor Peter Choong. The surgery was done in September 2006. Five days before Xmas we found out that the cancer has now spread to his buttocks, near his bowel, near his stomach, in his shoulder, in his pelvic region and has now entered the bone in his spine. He has started Doxorubicin chemotherapy as a palliative treatment only. Am hoping though that he may be one of the rare ones that are actually cured. You just never know.
    Is there anyone else in the forums that are or have a partner that is at the same stage as my husband? Would like to know how you are doing so far.
    Thanks for listening.
    Mary :)
  • cazzy
    cazzy Member Posts: 1
    #21
    maryfrancis3 said:

    I am in Australia so I cant comment on Dr Moehler, but I wish you luck with your outcome.

    My husband was diagnosed with Myxoid Liposarcoma in June 2006 in the right thigh also. His was 13 inches (33cm) in length and over 8 inches deep. After 5 weeks and 2 days of radiotherapy 5 days a week then 6 weeks recovery time, limb sparing surgery was done by Professor Peter Choong. The surgery was done in September 2006. Five days before Xmas we found out that the cancer has now spread to his buttocks, near his bowel, near his stomach, in his shoulder, in his pelvic region and has now entered the bone in his spine. He has started Doxorubicin chemotherapy as a palliative treatment only. Am hoping though that he may be one of the rare ones that are actually cured. You just never know.
    Is there anyone else in the forums that are or have a partner that is at the same stage as my husband? Would like to know how you are doing so far.
    Thanks for listening.
    Mary :)

    Hi Mary,
    I am also a patient of Prof Choong with stage 4 metastatic myxoid liposarcoma 1st diagnosed in July 2005. My case is similar to your husbands. I am most interested to hear how your husband is going having started Dox chemo. I have not yet started but will probably mid next year.
    Thanks
    Caz.

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