MYXOID LIPOSARCOMA

jamie-d
jamie-d Member Posts: 7
edited March 2014 in Sarcoma #1
ARE THERE ANY SURVIVORS OF MYXOID LIPOSARCOMA? ON TUESDAY I GO FOR A BONE TEST?! AFTER MY LAST SURGERY I STOPPED ASKING QUESTIONS, I'M SCARED, HAVE TWO BEAUTIFUL NIECES AND A BLIND MOM WHOM NEED ME. I AM VERY EASY TO TALK TO AND I'M JUST TRYING TO BREAK OUT OF MY SHELL AND LEARN ABOUT CANCER. SOMETIMES I GET CAUGHT UP IN ALL THE DAILY BUISNESS AND FORGET I'M SICK. EVEN WHEN I TAKE MEDS FOR PAIN I WAIT UNTILL THE LAST SECOND TO TAKE THEM. I FEEL I HAVE NO RIGHT TO PITTY MYSELF, I AM JUST REALLY SCARED. I DONT GET MUCH SLEEP, I AM ALWAYS SO NERVOUS AND MY MIND RACES, LOL NOT REALLY FUNNY, THINK I'M GOING NUTS. I COULD JUST USE SOME NICE WORDS OF ENCOURAGEMENT AND TO KNOW I'M NOT ALONE. ON ONE WEB SIGHT I WENT ON, IT SAID MYXOID LIPOSARCOMA IS RARE AND PEOPLE USUALLY GET IT BETWEEN THE AGES 50-70 ANOTHER WEB PAGE SAID IT'S MOST COMMONLY FOUND IN YOUNG CHILDREN. DO OTHER PEOPLE FEEL THE WAY I AM FEELING RIGHT NOW? TOMORROW I AM GONNA CALL MY DOC AND JUST EXPRESS MYSELF THE BEST WAY I CAN, SHE'S A NICE LADY, BUT FOR SOME REASON WHEN IT COMES DOWN TO ASKING QUESTIONS, EVERYTHING LEAVES MY HEAD. GOD BLESS ALL OF YOU!
SIGNED THE NEW GIRL

Comments

  • Emilyfimily
    Emilyfimily Member Posts: 141
    #2
    I had one in my leg. I'm
    I had one in my leg. I'm 31, had surgery last fall, and just finished chemo about 10 weeks ago. My scans came back NED, so now I'll just go for check-ups. You can do it! Keep positive!
  • jamie-d
    jamie-d Member Posts: 7
    #3
    Emilyfimily said:

    I had one in my leg. I'm
    I had one in my leg. I'm 31, had surgery last fall, and just finished chemo about 10 weeks ago. My scans came back NED, so now I'll just go for check-ups. You can do it! Keep positive!

    thanks
    Your so nice thanks a bunch and congrats!!!! I'm 31 also, ironic (sp)
  • nevereverhome
    nevereverhome Member Posts: 1
    #4
    me too.
    I'm 31 as well. I was diagnosed with myxoid liposarcoma in my left thigh in March. This was after delivering twins January 13th. I've finished 28 radiation sessions and had surgery to remove the sarcoma on July 16th. Now I'm recuperating and praying the sarcoma is gone for good. I don't really understand how they choose whether to do radiation or chemotherapy. Does anyone know? My doctor seemed optimistic that at 31 if I had radiation and surgery the prognosis was good and the chances of reccurence were slim. Now I'm wondering about recovery. How long will it take and will I always have pain and problems assoc. with this? Hang in there and take it a day at a time.
  • jmorin81
    jmorin81 Member Posts: 2
    #5
    nevereverhome said:

    me too.
    I'm 31 as well. I was diagnosed with myxoid liposarcoma in my left thigh in March. This was after delivering twins January 13th. I've finished 28 radiation sessions and had surgery to remove the sarcoma on July 16th. Now I'm recuperating and praying the sarcoma is gone for good. I don't really understand how they choose whether to do radiation or chemotherapy. Does anyone know? My doctor seemed optimistic that at 31 if I had radiation and surgery the prognosis was good and the chances of reccurence were slim. Now I'm wondering about recovery. How long will it take and will I always have pain and problems assoc. with this? Hang in there and take it a day at a time.

    I am 29, but I also have
    I am 29, but I also have twins. I have not been diagnosed with myxoid liposarcoma, but I just had surgery to remove the second spindle cell tumor. The first one was removed two years ago in my right groin area, near my thigh. The second one was removed a couple of weeks ago in the same area. It was sent to a pathologist in Boston because the first pathologist suggested it was low-grade myxoid liposarcoma. The "expert" pathologist said it was not and the chance of recurrence was slim to none. Well, here I am two years later and had the darn tumor again. I am waiting for my pathology report. Anyone have any advice? I have contacted a sarcoma center in my area (San Antonio, Texas) and am waiting to be seen by them. Are these tumors always benign or malignant or both? So little information out there! I wish everyone well...
  • Emilyfimily
    Emilyfimily Member Posts: 141
    #6
    jmorin81 said:

    I am 29, but I also have
    I am 29, but I also have twins. I have not been diagnosed with myxoid liposarcoma, but I just had surgery to remove the second spindle cell tumor. The first one was removed two years ago in my right groin area, near my thigh. The second one was removed a couple of weeks ago in the same area. It was sent to a pathologist in Boston because the first pathologist suggested it was low-grade myxoid liposarcoma. The "expert" pathologist said it was not and the chance of recurrence was slim to none. Well, here I am two years later and had the darn tumor again. I am waiting for my pathology report. Anyone have any advice? I have contacted a sarcoma center in my area (San Antonio, Texas) and am waiting to be seen by them. Are these tumors always benign or malignant or both? So little information out there! I wish everyone well...

    How frustrating
    Oh, how frustrating. I just had surgery the first time around - they said it was well differentiated and they got it all so I had the option of follow up radiation. Every doctor seemed so positive and acted like radiation was overkill. So, of course, I said, "Oh, okay, no thanks then."
    3 months later it came back w/sattelite spots and they said, "oh, our bad, looks like it's actually myxoid". So second go around, I went to another oncologist and he was *very* adamant about chemo b/c of all that time it had to spread. Nothing showed up anywhere else, but he said there could be one teeny tiny cell floating around my body that wouldn't necessarily show up, so better to be safe than sorry. Said once these metastasize, they always go to the lungs and it's really difficult to beat once it goes to your lungs. Sooo, that's why I did chemo. I did single agent red devil, aka doxorubicin or andryamicin (sp?).
    Got the big NED a month after finishing chemo, and just had my 3 mo scans last week. Still waiting on the results....
    It's aggravating - this stuff isn't really as prevelant as breast cancer, prostate cancer, etc, so it seems like there's no set path to go down really.
  • Emilyfimily
    Emilyfimily Member Posts: 141
    #7
    jmorin81 said:

    I am 29, but I also have
    I am 29, but I also have twins. I have not been diagnosed with myxoid liposarcoma, but I just had surgery to remove the second spindle cell tumor. The first one was removed two years ago in my right groin area, near my thigh. The second one was removed a couple of weeks ago in the same area. It was sent to a pathologist in Boston because the first pathologist suggested it was low-grade myxoid liposarcoma. The "expert" pathologist said it was not and the chance of recurrence was slim to none. Well, here I am two years later and had the darn tumor again. I am waiting for my pathology report. Anyone have any advice? I have contacted a sarcoma center in my area (San Antonio, Texas) and am waiting to be seen by them. Are these tumors always benign or malignant or both? So little information out there! I wish everyone well...

    Hey, not to be saying "You
    Hey, not to be saying "You ought to do this..." b/c I got a lot of that and it really bothered me. But, just to make sure you know, there's a kick butt sarcoma center at MD Anderson in Houston. Don't know how far you are from there, but...
    Hopefully, I'm done; but if I get another recurrence, I'm taking a leave of absence from work and am going there. Tired of messing with this stuff.
  • 24242
    24242 Member Posts: 1,398 Member
    #8
    Emilyfimily said:

    Hey, not to be saying "You
    Hey, not to be saying "You ought to do this..." b/c I got a lot of that and it really bothered me. But, just to make sure you know, there's a kick butt sarcoma center at MD Anderson in Houston. Don't know how far you are from there, but...
    Hopefully, I'm done; but if I get another recurrence, I'm taking a leave of absence from work and am going there. Tired of messing with this stuff.

    We meet here
    I am battling with a lump as you both know and I am really interested in what your lumps felt like and the pain experienced with your's Emily. Even with the lump in breast and then another in arm pit all so long ago I experienced the same pain and everyone just dismisses it until it is so bad and I was so sick.
    Hand goes totally numb and did for days along with this real lack of the energy to even be able to pick up a coffee pot. But when I think about starting it was just a pain or bothersome spot that I felt the more I used it. My bicept and tricept area right in the middle of upper arm affected by large lump. Mine are never seen above the surface of the skin and that seems to be a problem for doctors. It is growing and they do not want to remove it and that is getting to me after being here doing this before. Christ I couldn't have had cancer then and they are saying the same now. Hard to believe in or trust what they say since I am just to healthy for them I sometimes believe...
    Thanks for your advice and or input on this.
    Tara
  • lizwipp
    lizwipp Member Posts: 1
    #9
    Emilyfimily said:

    How frustrating
    Oh, how frustrating. I just had surgery the first time around - they said it was well differentiated and they got it all so I had the option of follow up radiation. Every doctor seemed so positive and acted like radiation was overkill. So, of course, I said, "Oh, okay, no thanks then."
    3 months later it came back w/sattelite spots and they said, "oh, our bad, looks like it's actually myxoid". So second go around, I went to another oncologist and he was *very* adamant about chemo b/c of all that time it had to spread. Nothing showed up anywhere else, but he said there could be one teeny tiny cell floating around my body that wouldn't necessarily show up, so better to be safe than sorry. Said once these metastasize, they always go to the lungs and it's really difficult to beat once it goes to your lungs. Sooo, that's why I did chemo. I did single agent red devil, aka doxorubicin or andryamicin (sp?).
    Got the big NED a month after finishing chemo, and just had my 3 mo scans last week. Still waiting on the results....
    It's aggravating - this stuff isn't really as prevelant as breast cancer, prostate cancer, etc, so it seems like there's no set path to go down really.

    Thanks for the info
    I had a myxoid liposarcoma in my neck that I had removed two weeks ago and my doctor just gave me the option for radiation or not because I had negative margins. I think after hearing your story I will seriously consider radition. They didn't even mention doing chemo but, I did have a neg PET scan. The fear my doctor expressed is that you can develop another sarcoma from the rediation and being I'm only 27 he wants to make sure that I have the best option for success.
    PS to the New Girl: I have also been dealing with fatigue, especially when dealing with my three yr old. I have learned you can try to ignore but, it doesn't help. Try to take time to rest when you can. I know it can be hard.
  • AMW
    AMW Member Posts: 2
    #10
    lizwipp said:

    Thanks for the info
    I had a myxoid liposarcoma in my neck that I had removed two weeks ago and my doctor just gave me the option for radiation or not because I had negative margins. I think after hearing your story I will seriously consider radition. They didn't even mention doing chemo but, I did have a neg PET scan. The fear my doctor expressed is that you can develop another sarcoma from the rediation and being I'm only 27 he wants to make sure that I have the best option for success.
    PS to the New Girl: I have also been dealing with fatigue, especially when dealing with my three yr old. I have learned you can try to ignore but, it doesn't help. Try to take time to rest when you can. I know it can be hard.

    I was diagnosed earlier
    I was diagnosed earlier this month with a myxoid liposarcoma in my right thigh; I start radiation next week , every day for a month and then surgery sometime in January. How does everyone keep sane wondering if they are doing the right thing regarding their treatment? I want to trust my doctors and their plan but all those dark, fearful thoughts keep popping up.....the fear of the unknown I guess. It's hard to thing of anything else but this tumor that has invaded my life. I just want to close my eyes and wake up and everything be over and fine. Reading your stories helps some to calm the dark thoughts. I feel like we are part of this elite group since so few people have sarcomas. ( a group I really don't want to be part of! )

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