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Myxoid RoundCell Liposarcoma

cpat
cpat Member Posts: 3
edited March 2014 in Sarcoma #1
I am new just dx'd August 28th. It is located in the right upper thigh. I have been referred to a surgeon experienced in soft tissue sarcomas and have had more MRI, and CAT yesterday Sept. I am awaiting results from the scans. I also had casting and tats done yesterday
I am so scared I can hardly type and this is my first time to reach out for support and information. I feel like I am in a bad dream moving so fast. Please can some one respond. Am I doing the right protocol? The surgeon said I need rads to pull the tumor away from the femural artery before surgery. No talk of chemo as of yet. I am a 52 yr old female
Can some one help me get this stark raving fear under control.

CPAT

Comments

  • Mrsbourceforce
    Mrsbourceforce Member Posts: 19
    Hello
    Hi, I'm sorry you are going through this. My husband was diagnosed in July with a high grade ( pleomorphic) liposarcoma . His is in his lower leg. He is getting radiation before surgury also. We have been researching chemo as well, because they do not usually consider it- I guess because it is not proven to work on most sarcomas. I have found a couple retrospective studies that show an improved survival rate with certain drugs. But.. He has already started rads and I think chemo is suposed to be pre surgury.. He isn't getting an appt with the medical oncologist until next month.. And only because we insisted on it. We live in Rochester Ny so we do have very good hospitals at least.. We are going to Roswell park in Buffalo next week for a second opinion with a sarcoma specialist. Liposarcomas are so rare it's hard to find experienced docs or many studies on it. Just make sure you do your own research, ask lots of questions and always advocate for yourself! This has been a horrible time for our family as well.. We have 10 and 13 year old children.. They are taking it ok for now. We are all trying to remain positive but I know it's difficult.
    Just try to take it a day at a time. Good luck
    Jeanette
  • alison21
    alison21 Member Posts: 6

    Hello
    Hi, I'm sorry you are going through this. My husband was diagnosed in July with a high grade ( pleomorphic) liposarcoma . His is in his lower leg. He is getting radiation before surgury also. We have been researching chemo as well, because they do not usually consider it- I guess because it is not proven to work on most sarcomas. I have found a couple retrospective studies that show an improved survival rate with certain drugs. But.. He has already started rads and I think chemo is suposed to be pre surgury.. He isn't getting an appt with the medical oncologist until next month.. And only because we insisted on it. We live in Rochester Ny so we do have very good hospitals at least.. We are going to Roswell park in Buffalo next week for a second opinion with a sarcoma specialist. Liposarcomas are so rare it's hard to find experienced docs or many studies on it. Just make sure you do your own research, ask lots of questions and always advocate for yourself! This has been a horrible time for our family as well.. We have 10 and 13 year old children.. They are taking it ok for now. We are all trying to remain positive but I know it's difficult.
    Just try to take it a day at a time. Good luck
    Jeanette

    Almost 5 year survivor
    Hi I am sorry to hear you both have a liposarcoma. I am almost a five year survivor of liposarcomo behind my left knee. I had it removed by wide excision then had about 40 radiation treatments. Chemo was never an option for me as they said it did not work on sarcomas. My best advice is to ask lots of questions and if unsure of the answer ask a few more. Learn as much as you can about your cancer which is hard because there is not much information about it out there. I am in Australia and went to a brilliant sarcoma specialist at Prince of Wales hospital in Sydney

    Goodluck to you both

    Alison
  • jgmarino
    jgmarino Member Posts: 1
    Myxoid RoundCell Liposarcoma
    i'm so sorry to hear about your situation! we found out my mom as myxoid roundcell liposarcoma in july. it has been a long roller coster ride ever since. she ran all the test and had biopsy done. she has a large tumor around 5 inches long in her left leg (calf) it is a very slow growing tumor. it never bother her until it was getting really big and her calf started to swell. she also had a small one in her chest but they took that one out when they did the biopsy! since the one in her leg spread to her chest, she started with chemo this week. if it wouldn't have spread she would have just done radation. we not sure yet how many rounds of chemo she will need but after that she will do radation. we are hoping and praying that radation will shrink it because if not they said she will have to cut her left off from the knee down! we are very hopeful and her doctors are wonderful!! i hope you get good results from your test! please keep in touch!
  • cpat
    cpat Member Posts: 3
    jgmarino said:

    Myxoid RoundCell Liposarcoma
    i'm so sorry to hear about your situation! we found out my mom as myxoid roundcell liposarcoma in july. it has been a long roller coster ride ever since. she ran all the test and had biopsy done. she has a large tumor around 5 inches long in her left leg (calf) it is a very slow growing tumor. it never bother her until it was getting really big and her calf started to swell. she also had a small one in her chest but they took that one out when they did the biopsy! since the one in her leg spread to her chest, she started with chemo this week. if it wouldn't have spread she would have just done radation. we not sure yet how many rounds of chemo she will need but after that she will do radation. we are hoping and praying that radation will shrink it because if not they said she will have to cut her left off from the knee down! we are very hopeful and her doctors are wonderful!! i hope you get good results from your test! please keep in touch!

    Thank you All for your responses!
    Gosh I just saw these replies
    I am glad and sad to have others to discuss this with.
    My Tumor is wraped around my femural artery and is 9cm.
    it located in my upper right thigh around the groin area.
    I just started Rads this past Wed. They are unable to do
    surgery first due to the location. I did have a biopsy first.
    I am like your mon jgmarino, no pain nor problems. I only discovered
    the lump in the shower in July as mine is growing deep in my leg and it wasn't until
    it came closer to the surface did I find it.
    I am still having a time with my nerves so the doctor has me on Ativant (sp)
    it does help me some to not be so freaked out all the time. I was also told
    that my tumor does not respond well to chemo. Is anyone else doing Radiation
    right now? What are you using for skin reaction. I have been using Aquafor
    and Udder Cream, so far no reaction but it is still early. My thoughts
    and prayers to you all please stay in touch with me everyone. I need your support and perhaps I can offer the same. I will check more now
    that I know others are here. The size of my tumor really freaked me out, but I understand
    that these do get large is this the case?
    Carrie
  • palmerka
    palmerka Member Posts: 1
    cpat said:

    Thank you All for your responses!
    Gosh I just saw these replies
    I am glad and sad to have others to discuss this with.
    My Tumor is wraped around my femural artery and is 9cm.
    it located in my upper right thigh around the groin area.
    I just started Rads this past Wed. They are unable to do
    surgery first due to the location. I did have a biopsy first.
    I am like your mon jgmarino, no pain nor problems. I only discovered
    the lump in the shower in July as mine is growing deep in my leg and it wasn't until
    it came closer to the surface did I find it.
    I am still having a time with my nerves so the doctor has me on Ativant (sp)
    it does help me some to not be so freaked out all the time. I was also told
    that my tumor does not respond well to chemo. Is anyone else doing Radiation
    right now? What are you using for skin reaction. I have been using Aquafor
    and Udder Cream, so far no reaction but it is still early. My thoughts
    and prayers to you all please stay in touch with me everyone. I need your support and perhaps I can offer the same. I will check more now
    that I know others are here. The size of my tumor really freaked me out, but I understand
    that these do get large is this the case?
    Carrie

    Myxoid Liposcarcoma
    It sounds like your treatments with pre-op radiation followed by limp sparing radical resection is what everyone without mets is leaning towards these days. I was treated in this way for my myxoid liposarcoma 10+ years ago and remained disease free until mets were discovered throughout my body. I am currently being treated at one of the best hospitals in the world (perhaps the best), but have been given a terminal diagosis with no specific time frame since in other other ways, except back pain where the largest met is located, I am in excellent health. Myxoids are "sneaky creatures", per my doctor, so diligent follow-up with MRIs and CT scans to chest,abdomen and pelvis are necessary for at least 10 years. The doc that treated my initial tumor did not recommend the scans in the c,a,p area b/c he said data showed no benefit after 5 years. I went on to have a baby at 8 years post initial diagnosis and now 22 months after the birth of my baby (10+ years from initial diagnosis) later have extensive disease. I just started my first round of an MAI regimen of chemo and will enter a clinical trial if after 2 cycles MAI shows no shrinkage or stablization of multiple tumors in my body. This feels like the worst nightmare that I cannot wake up from and am absolutely heartbroken. Any words of encouragement would be appreciated.