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Leiomyosarcoma

momoftrips
Posts: 7
Joined: Sep 2012

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!

G-MaKamama
Posts: 1
Joined: Oct 2012

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
Posts: 2
Joined: Dec 2012

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

 

Mona

wahine56's picture
wahine56
Posts: 3
Joined: Jan 2013

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
Posts: 2
Joined: Jan 2013

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~

moe1131
Posts: 8
Joined: Apr 2013

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.

terrypris
Posts: 3
Joined: Mar 2013

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)

moe1131
Posts: 8
Joined: Apr 2013

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.

 

patriar
Posts: 5
Joined: Nov 2012

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!

MDeer
Posts: 2
Joined: Jan 2013

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!

cathietogo
Posts: 2
Joined: Jan 2013

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.

MDeer
Posts: 2
Joined: Jan 2013

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!

NewJulsey
Posts: 1
Joined: Feb 2013

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
Posts: 11
Joined: Feb 2013

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
Posts: 1
Joined: Mar 2013

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!

MeChicago's picture
MeChicago
Posts: 4
Joined: Mar 2013

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.  

 

Oneinabillion
Posts: 11
Joined: Feb 2013

Really Quarryhome?  You think I had a leiomyosarcoma tumor removed along with a kidney and used a pediotrist that dabbles with sarcomas? :-)  That's just my sense of humor, don't take offense.  Actually I am being treated at MSKCC so I not only have a sarcoma specialist but I even have leiomyosarcoma speciialists on board.  Sorry I didn't respond earlier.  To be honest I forgot all about putting on this message. I came to the sight because I got some email about taking a survey.  Well the good news is the scans have been negative.  The end of this month will be a year and a half and since I don't have a CT scan scheduled this month I guess I'll make it.  Quarryhome, I hope I do change the odds more favorably for the next guy as you are the next guy :-)  I just had to call up the website again so I could read the other messages I wanted to address.  LEGALEAGLE, So what did you guys decide as far as the chemo/radiation.  I haven't heard anything about proton radiation yet.  Hope that thing on his lung turned out to be nothing.  SGPGAL, I would think by this time you have found a sarcoma treatment center.  I think listed as the 2 best are MD Anderson and MSKCC although Dana Farber and Columbia Presbitirian are up there as well.  There are also some other good ones I'm sure.  I would probably look one of the sarcoma centers listed on this website I believe that is nearest to you but one that has experience with leiomyosarcomas.  TERRIGAONA222, is she being treated at a sarcoma center?  DSMITTY53 I hope with the new health care system we have in this country you will be able to get the care that you need if you haven't been able to get it already.  NewJulsey mention a book to read as far as diet.  My "intergrated" doctor (never even heard of that before) suggested reading Anticancer A new way of life.  It's any interesting book giving lists of foods that are supposedly good for certain things and not good.  I was told to try to at least eat one of the anti cancer foods listed at each meal.  I have seen some sites that talk about foods that are good for different types of cancer (well preventing them). Unfortunetly the food that seems to general be the best is Brussel Sprouts YUCK. Haven't we been through enough already, but Brussel sprouts. :-)  The thing I don't like about this site is that you don't know how people are doing.  Good luck to all and my prayers are with you. 

gretaal
Posts: 3
Joined: Sep 2010

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

legaleagle
Posts: 4
Joined: Aug 2013

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. 

sgpgal
Posts: 1
Joined: May 2013

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

terrigaona222
Posts: 1
Joined: May 2013

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
Posts: 2
Joined: Jan 2013

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

tennesseekidd
Posts: 3
Joined: Feb 2012

I had this cancer in 1995 from neurofibromatosis and there wasn't any chemo then for this cancer. I hope she gets another opinion it sounds like the doctor doesn't know what he or she doesnt' know what thier doing.

dsmitty53
Posts: 1
Joined: Sep 2013

Hello, In 2003 my mother died of leimyosarcoma. I have been having symptoms that she had. Has anyone learned more about this cancer and does it run in families? I do not have insurance, make too much money, but have a lot of debt and do not make enough to afford the biopsy to find out if I have this. I was told that I have a thickening area in my uterus but can not afford the procedure to find out. Does the American Cancer Society offer any services to help me see if I have this same type of cancer?

Oneinabillion
Posts: 11
Joined: Feb 2013

FYI They put responses after the message you hit reply to instead of at the bottom so my response dated Dec 5 is up in the middle someplace.

suzanne611
Posts: 4
Joined: May 2011

I was diagnosed with LMS in april 2010 with stage 4 .primary a retroperitoneal mass with mets to liver, rt ureter and abdominal mass.  Little did I know my prognosis was 1 year.  4 rounds of chemo, radiation (includingcyberknife) and 7 surgeries later..i am still here.  I give total credit to Martee Hensley at Sloan Kettering. I use her sa a consultant because I live in Syracuse. 

The interesting thing is that when I was diagnosed the "internet" said no chemo was effective an surgery was the only option. then I met with Dr Hensley and was put on her research study and had resolution of the tumors. Reason I am saying this is that there ARE treatments available YOU have to be aggressive and do your homework. 

Now there are at least 4 treatment options along with new research studies being done which are new since 2010

I also was contacted regarding the survey

good luck and God bless

 

 

 

Oneinabillion
Posts: 11
Joined: Feb 2013

You go girl.  Thanks for sharing, I think that people will find that both useful and inspiring.  As Mr. Spock would say Live Long and Prosper.

 

share_hope
Posts: 2
Joined: Jan 2014

As this cancer is very common in people with Tp53 mutation (Li-fraumeni syndrome).The problem is not, many doctors understand this condition and are capable of diagnosing and treating this cancer.

It make a difference of life and death if you are treated with expert multidisplinary team of doctors specilised in sarcomas.

Oneinabillion
Posts: 11
Joined: Feb 2013

Hi dsmitty53,  I have never heard of leiomyosarcoma running in families, so not being a doctor, my guess would be that it is extremely unlikely that you have it.  That being said, of course you need to have it checked out as even if it's not that it could be something else.  Hopefully, being that you wrote this back in Sept., you have been able to get health insurance through the Affordable Care Act.  I look on the ACS website and they list their phone number as 1-800-227-2345 where they can give you more information.  You can also go to Healthcare.gov or call 1-800-318-2596.  I know this is kinda basic information, but I also know how overwhelming this can be and just want to make sure you have someplace to ask.  It sounds like they migh also be able to help you find other options for payment, and support programs in your area.  All I know is hopefully you have had this looked at already but if not don't waste time.  Do it as soon as you can.  Sorry I can't be of more help but good luck.

share_hope
Posts: 2
Joined: Jan 2014

I am new to this forum and been diagnosed with leiomyosarcoma in april 2011 and again in october 2013 in liver.I have had partial gastrectmy and nothing for liver mets yet.Its been a rollar coaster ride from last two months as doctors here in Australia still working out the best treatment.

Oneinabillion
Posts: 11
Joined: Feb 2013

Hi share_hope,  I agree based on everything I have hear that getting to a hospital that has a sarcoma center is very important.  on the website http://sarcomaalliance.org/sarcoma-centers/ they list 2 sarcoma centers in Australia.  Just hit the link and it will take you there.  I hope you are going to one of these but if not I would try to get there if you want to stay in Australia and the sooner the better.  Good luck.

 

Oneinabillion
Posts: 11
Joined: Feb 2013

Hello, hello, hello is there anybody out there, can anybody hear me, is there any-bod-y home

 

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