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Posts: 3
Joined: Jul 2006

Happy Fourth of July! I have recently been diagnosed with stage four leiomyosarcoma. I have been to two doctors. Both want to start me on chemo. It has been recommended that I seek out therapy at MD Anderson because they have sarcoma specialists. Trying to get into MD Anderson has been similar to trying to jump through hoops. I don't know what it takes to get an appointment. They have all my reports, medical slides, etc. They keep telling me that this cancer is often misdiagnosed and very rare. Any suggestions would be greatly appreciated!

Posts: 1560
Joined: May 2006


You may want to contact your diagnosing phyician to assist you in getting your appointment with MD Anderson. You can also contact the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day and can assist you with information on your diagnosis as well as give you resources in navigating the health care system. They can be reached at 1-800-227-2345.

I wish you the best on your treatment.

Take care and be well,

CSN Dana

Posts: 2
Joined: Nov 2006

Hi, Theatricaleyes. Have you had any luck getting to M.D. Anderson? My wife, who is the real Paulia, was diagnosed with a sarcoma last September. Our internist sent her to our local cancer center and the oncologist said that tere was only one place for her to go and that Was M.D. Anderson. We went there last November and that was when she was told that it was a leiomyosarcom. We were then assigned to a surgical oncologist, medical oncologist and a radiation oncologist. They then planned the treatment and the surgeon was the captain of the team. They set her up for chemo, followed by radiation and then surgery. Since we live in California, she could not have the treatment in Houston. She had one course of chemo and then we returned to HOuston for evaluation. There was minimal change. We returned homed and she started having chemo again, but she had a bad reaction to it and ended up in the hospital in a coma. She fully recovered and went on to have radiation. Her tumor was so unigue that she had to go to UCLA (105 miles away) five days a week for five weeks. Six weeks later we returned to Houston where she had surgery. They removed a barbell shaped tumor the size of a grapefruit attached to an orange. She also had extensive plastic surgery. That was five and a half weeks ago and she is recovering fairly well. The pain is minimal, but since the tumor was in the groin and pelvis, she has to limit the amount that she can sit to protect the skin graft.

At first we thought that everything was great, but she had another problem. Her cancer had invaded an AMV (arterio-Venous malformation) which is a non-cancerous tumor that had been neutralized. This AVM could not be removed without great risk of fatality. They did remove a major portion of it, but could not go any farther without risking her life. That left some of the cancer cells. Right now it looks like there is nothing that can be done but we will be going back to M.D. Anderson to start looking at other options.

We would like to hear more about your LMS, what you have had done and how you are doing.

Posts: 5
Joined: May 2007

I was diagnosed with Stage IV Leiomyosarcoma in May of 2005. If you live near NYC, Martee Hensley ( Sloane Kettering) is doing chemo with Gemcitabine (Gemzar) and Taxotere. I found a local onlcologist who did my emergency surgery to treat me with the same protocol. My tumor was the size of a melon. Almost 2 pounds. The local Dr. here is fabulous. Dr. Benjamin Schwartz. Babylon, NY. I have been cancer free Since last chemo treatment. He is an excellent surgeon with great credentials. Accepts most insurance.

Catrinka's picture
Posts: 4
Joined: Oct 2007

Hi Bella29,

Just wanted to see how you're doing since your post on 9/11/07/ I was diagnosed with LMS on 9/7/07 and am currently half way through my chemo. I'm on the same two drugs you were on. I'd love to hear about your experience with chemo and such. How many treatments did you have? I have to have 18 and will have my 8th treatment this thursday. I haven't lost my hair but it is thinning a little. I'm taking herbal supplements and Goji berries which I believe have helped me. How did you tolerate the chemo? I'm doing remarkably well. Thank you for your time.

Posts: 2
Joined: May 2016

My sister was diagnosed with uternine leiomyosarcoma. She lives in Toronto Canada. She is in shock and unable to figure things out. Could you help me?

1) Which hospital would you recommend? Mount Sinai or Sunnybrook hospital.

2) She had surgery to remove fibroid and the biopsy came back with leiomyosarcoma.  She hasnt been seen by oncologist yet. We are trying to CTSCAN done.

3) What does OHIP insurance cover and what it doesnt cover? 

Thank you. appreciate your help.

Posts: 1
Joined: Feb 2017

My husband was diagnsed in Nov, 2015, what started out looking like a sprained ankle, several trips to ER, was first diagnosed with Rabdomyosarcom, was actually leiomyosarcoma-Stage 4, grade 3. He also had several lipnoids in the groan area that this had spread to.  Since his diagnosis, he lost part of his leg, been through Chemo, Radiation.  He gets sick daily, even after Chemo and Radiation has been completed.  The leg didnt want to heal very well.  Part of the bone actually came through the leg, he even broke a pc of it off while messing with it.  Bone deteriating?  He again, went in, they removed more of the bone.  Poor guy see's people using their prostetic legs, with no problems.  He still has yet to use his without the help of his forearm crutches.  He uses his upper body to support alot of his weight.  This was a man who was active in hunting, fishing, working. 

  Some of my concerns:  He still gets sick everyday.  He may only eat a small amount, and I hear him getting sick.  I've asked him to drink some Protein shakes, just to make sure he's getting his vitamins, ect.. he wont.  Is this common??

Doctors found numerous polyips in his stomach, is this normal, could this be causing him to get sick?

Doctors also told us when he was first diagnoised, he had a spot on his lung. Not to worry, well, we are now at 3 spots on his lung.  This Cancer goes straight for the LUng, why are they not doing anything?   Yes, we see a Sarcoma Specialist.  I feel like I have to drag info out of them. 

He currently goes back every 3 months for scans. Sarcoma is still present.  During his Chemo treatment which was for 6 weeks, five days a week and almost 6 hours a day, the cancer actually grew... I have read that Chemo/Radiation have little affect on this cancer. 

Is anyone out there that can tell me it will be ok? That I will have my husband around for a long time?  That he wont live in pain?  That he wont lose any more body parts?  That he wont wake up in the middle of the night,his heart racing?  That I wont catch him crying?  Is he hurting?  Is he scared? This wife doesn't know what to do anymore...   

Posts: 4
Joined: Sep 2017

My wife was diagnosed with stage 4 Leiomyosarcoma last November.  The cancer is in both lungs, liver, kidney, hip (maybe both) and was in her right femur and in her lower back.  She is currently on Gemzar and Taxotere (spelling I know).  She is doing great right now the main tumor around her kidney seems to be shrinking but we are not sure about in the other areas but she is no longer coughing which is good.  She was on a new chemo combo to start that did not work than on a chemo that damaged her heart and now it is back to the Gemzar which like I said appears to be working.  You need to rember that nothing is written in stone and try to have him keep a positive attitude (I know that is the hardest thing to do).  I don't know how long she has but there is hope and will always be hope.

Posts: 1
Joined: Nov 2017

I had a 10 cm stage 2b retroperitoneal leiomyosarcoma tumor removed about 5months ago with clear margins. Has anyone on here had this type of cancer removed with clear margins and had a reoccurence? 

Pattie R
Posts: 5
Joined: Mar 2017

I have been getting chemo to shrink my tumor, and after 8 cycles of chemo my oncologist and surgeon have advised me I am ready for surgery to remove the tumor that is occluding the IVC. I have an appointment on Friday to find out when the surgery will be scheduled. I am interested in hearing from you about the surgery, and how long it took you to recover. How long did the surgery take? How long were you in the hospital? How severe was the pain? I am very anxious about this surgery. I hope you continue to do well. 

PVal123's picture
Posts: 1
Joined: Feb 2018

I had a 14cm leiomyosarcoma tumor removed from my calf in Sept 2014. It had not spread and I had clear margins. 2 years Layer it returned in my lungs.  i just started Votient - only been a week but yes I had clear margins and it did come back. 

Posts: 4
Joined: Sep 2017

My wife has stage 4 leiomyosarcoma she has a large tumor pressing against her right kidney, she has lesions to many to count in both lungs and her liver and a spot on her thigh bone.  She has congestive heart failure and also has kidney failure.  We just went to the er tlr the 3rd time in 3 weeks.  She was diagnosed in Dec 16 2016 already at stage 4.  What are her survival expectations. 

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