Leiomyosarcoma

momoftrips
momoftrips Member Posts: 7
edited November 2022 in Sarcoma #1
Looking for people that have beat this rare cancer and what worked for treament etc.

My sister is 30yrs old and had surgery to remove a large mass on her right ovary thinking it was ovarian cancer sarcoma. Pathology came back yesterday and it is leiomyosarcoma.

She was able to keep her left ovary and uterus which seems odd to me but maybe because of her age etc. Just seems the uterus would be a recuurence spot?

Please help and pray! We go to meet with doctors tomorrow for her treatment plan and unanswered questions we have.

Thanks!
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Comments

  • G-MaKamama
    G-MaKamama Member Posts: 1
    I was found to have
    I was found to have leiomyosarcoma july 2011 after a hysterectomy. I was told there is no treatment for what I have, only monitoring of it thru CT Scans. My surgery did not allow for clear margins to be left which I am told is very important with this. I am now told last week that I have tumors on my adrenal gland, spots on my liver, and the large lump on my shoulder makes it stage 4. What that means I have no idea as I am told there is nothing can be done. I hurt, am extremely tired, and just plain feel like crap. But I have to keep trying to work and keep on living best I can. I have good days, I have bad days. I am receiving nothing to help or change anything.
  • monag505
    monag505 Member Posts: 2

    I was found to have
    I was found to have leiomyosarcoma july 2011 after a hysterectomy. I was told there is no treatment for what I have, only monitoring of it thru CT Scans. My surgery did not allow for clear margins to be left which I am told is very important with this. I am now told last week that I have tumors on my adrenal gland, spots on my liver, and the large lump on my shoulder makes it stage 4. What that means I have no idea as I am told there is nothing can be done. I hurt, am extremely tired, and just plain feel like crap. But I have to keep trying to work and keep on living best I can. I have good days, I have bad days. I am receiving nothing to help or change anything.

    I was recently diganoised with ULMS

    Hi, I just read your post, did your Dr. recommend Radiation or Chemo. 

     

    Mona

  • MDeer
    MDeer Member Posts: 2
    LMS

    I had a hysterectomy in January 201anti remove a 5 pound fibroid that head my cervix dilated 5 cm. of course u was told there was no need to worry. Welmy during my postoperative visit I was told it was positive for LMS. I just completed chemo and radiation as a "preventative" measure. Now it seems like every muscle and joint in my body hurts and I Ann scared to death. I have no health insurance so I am in the charity health care system a d am afraid they will not be as aggressive in treatment as I have read this disease can be. Any concerns the pain could be related to LMS?  Help!

  • MDeer
    MDeer Member Posts: 2
    LMS

    I had a hysterectomy in January 201and had  a 5 pound fibroid that had my cervix dilated 5 cm. of course i was told there was no need to worry. Well  during my postoperative visit I was told it was positive for LMS. I just completed chemo and radiation as a "preventative" measure. Now it seems like every muscle and joint in my body hurts and I Am scared to death. I have no health insurance so I am in the charity health care system and am afraid they will not be as aggressive in treatment as I have read this disease can be. Any concerns the pain could be related to LMS?  Help!

  • wahine56
    wahine56 Member Posts: 3

    I was found to have
    I was found to have leiomyosarcoma july 2011 after a hysterectomy. I was told there is no treatment for what I have, only monitoring of it thru CT Scans. My surgery did not allow for clear margins to be left which I am told is very important with this. I am now told last week that I have tumors on my adrenal gland, spots on my liver, and the large lump on my shoulder makes it stage 4. What that means I have no idea as I am told there is nothing can be done. I hurt, am extremely tired, and just plain feel like crap. But I have to keep trying to work and keep on living best I can. I have good days, I have bad days. I am receiving nothing to help or change anything.

    LMS

    I was diagnosed Sept2011 after a hysterectomy for fibroids. I am stage IV with tumors on my back, in my liver, and in my lungs. Have gone thru radiation on my back, two different chemos, one of which worked to control for a few months. Now am taking new drug called Votrient and it has kept tumors stagnant for over six months.  No one knows how long this will last.  This is a very scary cancer, and no one knows much, other than there is no cure.  Look for a GOOD cancer center that specializes in sarcomas. Good luck to you. 

     

  • cathietogo
    cathietogo Member Posts: 2
    wahine56 said:

    LMS

    I was diagnosed Sept2011 after a hysterectomy for fibroids. I am stage IV with tumors on my back, in my liver, and in my lungs. Have gone thru radiation on my back, two different chemos, one of which worked to control for a few months. Now am taking new drug called Votrient and it has kept tumors stagnant for over six months.  No one knows how long this will last.  This is a very scary cancer, and no one knows much, other than there is no cure.  Look for a GOOD cancer center that specializes in sarcomas. Good luck to you. 

     

    Hi

    Bless your heart! I was just diognosed with LMS in my uterus. I am supposed to have full hysterectomy plus take out my cervix and lymph nodes. Having another cat scan on MOnday to see if it has spread to my lungs and liver. It is very scary!! I was told that this type of cancer does not respond well to chemo or radiation. But I see you are takiing it. How old are you? I am 56. Best of everything to you too! I pray for you to be cancer free~

  • cathietogo
    cathietogo Member Posts: 2
    MDeer said:

    LMS

    I had a hysterectomy in January 201anti remove a 5 pound fibroid that head my cervix dilated 5 cm. of course u was told there was no need to worry. Welmy during my postoperative visit I was told it was positive for LMS. I just completed chemo and radiation as a "preventative" measure. Now it seems like every muscle and joint in my body hurts and I Ann scared to death. I have no health insurance so I am in the charity health care system a d am afraid they will not be as aggressive in treatment as I have read this disease can be. Any concerns the pain could be related to LMS?  Help!

    Hi

    Prayers for you! I was just diognosed 2 weeks ago with LMS in my uterus. It is very scary. Going to have surgery very soon. Where is your located?  Mine is in the uterus. Having another cat scan on Monday to see if it has spread to my lungs and liver. ugh. It is awful.  Praying for you.

  • NewJulsey
    NewJulsey Member Posts: 1
    LMS

    I had a fibroid removed.  The pathology report showed that it was a Leiomyo Sarcoma.  I went in a week later for a total hysterectomy.  I have been clear since then - 9/2008.  I'm almost at 5 years.  I read a book called "Forks Over Knives" and heard that vegan diet helps with cancer.  Everything I read says to be sure you go to a Sarcoma Oncologist.  I went to a Gynecological Oncologist.  I am glad I had a total hysterectomy, because it gives me a little more peace of mind.

  • Oneinabillion
    Oneinabillion Member Posts: 17 Member
    leiomyosarcoma

    My first discussion board and figures it would be something like this.  My name is based on I had a LMS which was in my renal vein removed around the middle of 2012 and being a man from what I found as of 2009 there were only 10 know cases.  Hence the name.  I am so in the dark, believe it or not, I don't even know what stage it was.  Supposedly it was caught on the early side but was the size of a large orange so I don't know if it was that early.  My kidney was also removed for.  Unfournuetly the Path report did not show a clear margin.  Have a scan coming up later in the week. Up till now scans have been negative but as I get closer to the scan date getting more worried.  The odds are not in my favor but hey, it's so rare I can change the odds for the next guy.  I was allergic to one of the chemo drugs but none other have been tried.  I was wondering if anyone knows anything about proton radiation in realtionship to LMS.  Thanks and good luck to everyone.  We all can use some. 

  • quarryhome
    quarryhome Member Posts: 1 Member

    leiomyosarcoma

    My first discussion board and figures it would be something like this.  My name is based on I had a LMS which was in my renal vein removed around the middle of 2012 and being a man from what I found as of 2009 there were only 10 know cases.  Hence the name.  I am so in the dark, believe it or not, I don't even know what stage it was.  Supposedly it was caught on the early side but was the size of a large orange so I don't know if it was that early.  My kidney was also removed for.  Unfournuetly the Path report did not show a clear margin.  Have a scan coming up later in the week. Up till now scans have been negative but as I get closer to the scan date getting more worried.  The odds are not in my favor but hey, it's so rare I can change the odds for the next guy.  I was allergic to one of the chemo drugs but none other have been tried.  I was wondering if anyone knows anything about proton radiation in realtionship to LMS.  Thanks and good luck to everyone.  We all can use some. 

    Prayers

    Hey oneina billion- love your attitude! I was operated on in June 2012 for leiomio in my left side. Lost ovary, kidney and 1/3 my colon. Tumor was huge about size of a basket ball. Never knew I had it until I began to lose weight. I should note I had regular annual physicals but they never caught it. They tell me I am rare also. I praise God  for his healing and my Doctor's knowledge. He was a wonder.  I love Emory! Had radiation treatments only as I was told chemo does not work with this. Discussed proton but they said it would not work for me. So far I am clear. I do have nerve damage to my legs but I am back at work and dealing with God's help.  You may change the odds for the next guy. They know so little of sarcoma that there are no applicable odds. Have hope, do not give up for more than 2 days :) Know you are loved and there is some reason for the pain you have been through. God will explain it all to you one day. Ask lots of questions of your doctors. I think you need a sarcoma doctor specifically. They did catch it early so things are looking good so far. I know of a woman free from sarcoma for 23 years. Now that's a story!

  • terrypris
    terrypris Member Posts: 4

    I was found to have
    I was found to have leiomyosarcoma july 2011 after a hysterectomy. I was told there is no treatment for what I have, only monitoring of it thru CT Scans. My surgery did not allow for clear margins to be left which I am told is very important with this. I am now told last week that I have tumors on my adrenal gland, spots on my liver, and the large lump on my shoulder makes it stage 4. What that means I have no idea as I am told there is nothing can be done. I hurt, am extremely tired, and just plain feel like crap. But I have to keep trying to work and keep on living best I can. I have good days, I have bad days. I am receiving nothing to help or change anything.

    i was found to have

    G-Makamama, I have been told the same thing, I am going thru ct scans. At least you are young I am not. I am told it is in the abnormal. And thru the grace of God those tumors are going to disappear.. The doctor gave me the pill called "anastrozole" one every day. I cannot tell if is helping. But I think it is cause the CT in October came out clear. And I was told that there was no cancer. But the CT in January is showing some thing. Now my CT is like every two months. I am concern that I am having two many CT. Cause I am 79 year old. If there is any one out there that is  as old as me let me know.  Why haven't the doctor given you chemotherapy. I know of some people that have sarcoma and they have received chemo. And they are doing fine but they do have to have a CT every three months. 

    Read Ps. 103:2-5 and have faith. (excuse my spelling)

  • gretaal
    gretaal Member Posts: 3

    leiomyosarcoma

    My first discussion board and figures it would be something like this.  My name is based on I had a LMS which was in my renal vein removed around the middle of 2012 and being a man from what I found as of 2009 there were only 10 know cases.  Hence the name.  I am so in the dark, believe it or not, I don't even know what stage it was.  Supposedly it was caught on the early side but was the size of a large orange so I don't know if it was that early.  My kidney was also removed for.  Unfournuetly the Path report did not show a clear margin.  Have a scan coming up later in the week. Up till now scans have been negative but as I get closer to the scan date getting more worried.  The odds are not in my favor but hey, it's so rare I can change the odds for the next guy.  I was allergic to one of the chemo drugs but none other have been tried.  I was wondering if anyone knows anything about proton radiation in realtionship to LMS.  Thanks and good luck to everyone.  We all can use some. 

    3 yrs living

    The only thing I know for sure is you MUST see a sarcoma specialist!!!  

  • moe1131
    moe1131 Member Posts: 8

    I was found to have
    I was found to have leiomyosarcoma july 2011 after a hysterectomy. I was told there is no treatment for what I have, only monitoring of it thru CT Scans. My surgery did not allow for clear margins to be left which I am told is very important with this. I am now told last week that I have tumors on my adrenal gland, spots on my liver, and the large lump on my shoulder makes it stage 4. What that means I have no idea as I am told there is nothing can be done. I hurt, am extremely tired, and just plain feel like crap. But I have to keep trying to work and keep on living best I can. I have good days, I have bad days. I am receiving nothing to help or change anything.

    Leiomyosarcoma

    I have stage four Leiomysarcoma all that means is it started in one area and has spread to another. It started in my left thigh and I had surgery to remove the tumor it was extensive leg surgery. It then showed up in my left lung which can-not be operated on due to being in the hilar area. I had two rounds of chemo for my lungs and one round of radiation which shrunk the tumor to about half the size now, and things in my lung are stable. Recently I had a small tumor pop up in my right leg small and had it removed. The FDA just approved a drug in April of 2012 called Votrient which was delveloped for Kidney sarcomas ,but they found out it works on other sarcoma,s I'm going to start taking the drug this week. I would get a second opinion on treatment and research the drug.

    I believe there is always something that can be done cancer is a on going battle with many set backs and every day new developments are being made. I went to Sloan Kettering for a second opinion and have been fighting this for two years now.

     

  • moe1131
    moe1131 Member Posts: 8
    wahine56 said:

    LMS

    I was diagnosed Sept2011 after a hysterectomy for fibroids. I am stage IV with tumors on my back, in my liver, and in my lungs. Have gone thru radiation on my back, two different chemos, one of which worked to control for a few months. Now am taking new drug called Votrient and it has kept tumors stagnant for over six months.  No one knows how long this will last.  This is a very scary cancer, and no one knows much, other than there is no cure.  Look for a GOOD cancer center that specializes in sarcomas. Good luck to you. 

     

    Votrient

    How are you doing on the drug, I start taking it today. I have tumors on my lungs, and one just pop up in my right leg that was removed. I had a pet scan this past Monday waiting for results to see if it's any-where else.

  • MeChicago
    MeChicago Member Posts: 4

    Prayers

    Hey oneina billion- love your attitude! I was operated on in June 2012 for leiomio in my left side. Lost ovary, kidney and 1/3 my colon. Tumor was huge about size of a basket ball. Never knew I had it until I began to lose weight. I should note I had regular annual physicals but they never caught it. They tell me I am rare also. I praise God  for his healing and my Doctor's knowledge. He was a wonder.  I love Emory! Had radiation treatments only as I was told chemo does not work with this. Discussed proton but they said it would not work for me. So far I am clear. I do have nerve damage to my legs but I am back at work and dealing with God's help.  You may change the odds for the next guy. They know so little of sarcoma that there are no applicable odds. Have hope, do not give up for more than 2 days :) Know you are loved and there is some reason for the pain you have been through. God will explain it all to you one day. Ask lots of questions of your doctors. I think you need a sarcoma doctor specifically. They did catch it early so things are looking good so far. I know of a woman free from sarcoma for 23 years. Now that's a story!

    quarry

    Glad to read you are doing well.  And loved the last line about a 23 year survivor!

     

    Surgery 1/30/13  6cm LMS tumor remove - was between rectal area and vagina.  Part of vagina removed and rebuilt.  Rectum saved and very thankful.  Going through 12 rounds of chemo.  5 weeks of 5 days a week of radiation to follow chemo, because margins clear, but not as large of margins tht they would have likes to see.

    Not a lot of info out there on LMS.  Prognosis?  Stats?  Going through these treatments and having secondary problems.  Wondering if they really work and recently find myself crying often. Not able to return to work for 4 months and sad about that, but also know im not strong enough to be there and do a good job.

    I have tried to remain strong for family, friends and myself.  Struggling.  Would like to hear from LMS survivors.  

     

  • patriar
    patriar Member Posts: 5
    moe1131 said:

    Leiomyosarcoma

    I have stage four Leiomysarcoma all that means is it started in one area and has spread to another. It started in my left thigh and I had surgery to remove the tumor it was extensive leg surgery. It then showed up in my left lung which can-not be operated on due to being in the hilar area. I had two rounds of chemo for my lungs and one round of radiation which shrunk the tumor to about half the size now, and things in my lung are stable. Recently I had a small tumor pop up in my right leg small and had it removed. The FDA just approved a drug in April of 2012 called Votrient which was delveloped for Kidney sarcomas ,but they found out it works on other sarcoma,s I'm going to start taking the drug this week. I would get a second opinion on treatment and research the drug.

    I believe there is always something that can be done cancer is a on going battle with many set backs and every day new developments are being made. I went to Sloan Kettering for a second opinion and have been fighting this for two years now.

     

    LMS

    Hello Moe 1131,

    I will pray that you continue to fight until a cure is found for this horrible cancer.  I also had a large LMS tumor removed from my left thigh in October, after going through two rounds of chemo (AIM) then radiation and two more rounds of chemo.  I just finished what was supposed to be my last round of chemo in March and went in for my MRI and CT scans with hopes of getting the "all clear" from my docs.  I did get the great news that there's no detection of recurrence in my thigh, but they did find two spots - one in each lung.  I'm now waiting for authorization from my insurance company for  PET Scan and biopsy.  Did you get chemo for your thigh? If so, did they use the same chemo for your lungs.  Also, what kind of side affects have you had from the votrient and do you have to take it daily?  I'm praying for us all!  So frustrating!

  • sgpgal
    sgpgal Member Posts: 1
    Sarcoma specialists

    Can anyone recommend a good sarcoma specialist or a sarcoma treatment center that is well known for treating LMS? 

  • terrigaona222
    terrigaona222 Member Posts: 1
    Caregiver

    I do not have leiomyosarcoma. I am the caregiver of someone who does. All cancers are scarey but this one is horrifying. She had surgery in November for what the doctor thought was just a fibroid mass. I do not even know if there were clear margins or not. The doctor was very surprised to find leiomyosarcoma. She had five rounds of chemo which I didn't understand because everything I've read says it isn't effective in treatment of this cancer. The chemo made her very ill and almost shut down her kidneys. doctor stopped the chemo and started her on some pills. No scan again till August. She is still very tired and weak. Is this normal. She can't walk across room without being out of breath.

  • ultracyclist
    ultracyclist Member Posts: 2

    Caregiver

    I do not have leiomyosarcoma. I am the caregiver of someone who does. All cancers are scarey but this one is horrifying. She had surgery in November for what the doctor thought was just a fibroid mass. I do not even know if there were clear margins or not. The doctor was very surprised to find leiomyosarcoma. She had five rounds of chemo which I didn't understand because everything I've read says it isn't effective in treatment of this cancer. The chemo made her very ill and almost shut down her kidneys. doctor stopped the chemo and started her on some pills. No scan again till August. She is still very tired and weak. Is this normal. She can't walk across room without being out of breath.

    Caregiver

    I too am a caregiver. my wife has been fighting LMS since 1998. I wish I knew then what I know now. LMS does not nrespond well to chemo or radiation. There is now a new chemo that was just released, Votreint. She started taking it but had to stop due to a serious infection. You need to find Good oncologist who knows what they are doing. We are from the Philly area and are to Jefferson Hospital for her treatment. All LMS are rare cancers, with very few people having them, but hers is even more rare. It is atypical, only having a 3 - 5 % growth rate. That means that all the chemos she had only gave her the side-effects. After 5 oncologist, we found one who finally asked the unasked question, why are you still alive and proceeded to investigate. She is best. If you want the contact, I will get glad to forward it to you.

     

    My prayers are with both of you

     

    ultracyclist

  • legaleagle
    legaleagle Member Posts: 4

    leiomyosarcoma

    My first discussion board and figures it would be something like this.  My name is based on I had a LMS which was in my renal vein removed around the middle of 2012 and being a man from what I found as of 2009 there were only 10 know cases.  Hence the name.  I am so in the dark, believe it or not, I don't even know what stage it was.  Supposedly it was caught on the early side but was the size of a large orange so I don't know if it was that early.  My kidney was also removed for.  Unfournuetly the Path report did not show a clear margin.  Have a scan coming up later in the week. Up till now scans have been negative but as I get closer to the scan date getting more worried.  The odds are not in my favor but hey, it's so rare I can change the odds for the next guy.  I was allergic to one of the chemo drugs but none other have been tried.  I was wondering if anyone knows anything about proton radiation in realtionship to LMS.  Thanks and good luck to everyone.  We all can use some. 

    Would love an update

    Hi Oneinabillion,

    I had to chuckle when you stated that this was your first message board and it figures that it would be something like this.  That is exactly the type of comment that I would say!  My husband was just diagnosed with LMS (about two weeks ago) with a tumor on his liver.  They believe that it is the primary (as they can find no other tumors, although there is a tiny spot on his lung that they believe is a cyst; it's too small to biopsy right now).  He is not the type to do research and he barely wants to talk about this, so I've been gathering as much information as I can for this rare cancer.  He had the tumor removed Duke and will be going to MD Anderson for a second opinion.  So far, we have been told that there may be a possibility of radiation or chemo because the margins were so close during the surgery.  He's meeting with Duke's sarcoma specialist first, then we are off to MD Anderson.

    How was your last scan and how are you doing?  Did you ever decide to go with the proton radiation?  If so how did that work for you?  Thanks so much for your help!  I'm really trying to hold it together for both him and I.