Leiomyosarcoma – Survival Rate, Symptoms, Prognosis, Treatment

What is Leiomyosarcoma?

Leiomyosarcoma is a cancer that originates from tissues such as the nerves, arteries and veins, muscles, and other soft tissues in our body. Leiosarcoma is rare, and commonly affects people over age 50. They affect different parts of our body, but many patients that are affected with Leiomyosarcoma have tumors in the smooth muscles of the body. Smooth muscles are found in areas in our body where we have no control of like the stomach, and blood vessels.

Leiomyosarcoma pictures

Leiomyosarcoma in the Soft Tissues of the Ear

Leiomyosarcoma Symptoms  

This condition does not have symptoms in its early stages; in this case, this condition is diagnosed after the appearance of the symptoms. I have listed down the symptoms of Leiomyosarcoma.

  • Abdominal Distress – This can be present if the tumor is located in an area near the abdomen such as the stomach, intestines and other organs located in the abdomen.
  • Fever – Although this is a general defense mechanism that our body use against systemic infection and other foreign bodies, this can be present in a patient with Leiomyosarcoma. Please note that this can also be associated with other disease that is why fever is not a definitive symptom of Leimyosarcoma.
  • Pain – This will be present, this is a general defense mechanism of the body to alert the person that there is something bad that is going on inside the body. Please take note that this is not a definitive symptom of Leiomyosarcoma because this can be caused by many other medical conditions.
  • Lump – A visible lump signify a superficial tumor. However, tumors can be deep within the body so the lump is not visible.

Causes of Leiomyosarcoma

The exact reason that causes Leiomyosarcoma remains unclear as of this day, but researchers still do their best to reveal more information about this condition. I will list down other factors that were associated with Leiomyosarcoma.

  • Smoking – This is included in our risk factors because most of cancers are induced by smoking. Smoking is very bad to our health, I suggest that if you want to have a healthy life, stop smoking.
  • Radiation – Radiation causes mutation of the cells and it will be the cause of cancer.
  • Chemical Exposure – There are some chemicals that are associated with this condition. Chemicals such as herbicides and plastic making chemicals are associated with the disease.

Diagnosis of Leiomyosarcoma

As I have stated earlier, the symptoms comes first before the diagnosis. If the symptoms occur, there are chances where the tumor has spread and impede the normal functions of our body already. An expert advice is needed and a series of exams are necessary. There are a lot of exams needed to rule out the diagnosis of Leiomyosarcoma.

  • Endoscopy – This is to check if the tumor is located along the upper Gastrointestinal (GI) tract. This procedure can also get some samples (biopsy) from the tumor if it is located along the upper GI tract.
  • Hysteroscopy – This is to check if the tumor is located along the reproductive organ of the female gender.
  • Advanced Imaging Tests – This includes MRI and CT scan, they are both specialized imaging test that is used to scan the tumor deeper. Also, it can produce a detailed result on the status of the tumor. And after the treatment, this can also be ordered to know if the treatment is successful.
Leiomyosarcoma images
An MRI Scan Showing Leiomyosarcoma in the Abdominal cavity
  • Biopsy – Biopsy will be used to extract specimens from the tumor. The type of biopsy will be needed will depend on the location of the tumor, and biopsy may be combined with other diagnostic exams to increase the diagnosis’ efficiency.

Treatment of Leiomyosarcoma


The main treatment course is surgery, this is to remove the tumor and to also relieve the complications that are caused by the tumor. (e.g. pressure to the liver which may cause loss of appetite)

Radiation Therapy

This therapy is used to kill cancer cells. This is used mainly to kill the remnant cancer cells that are left behind by the surgery. For patients that are not able to undergo surgery, this can be an option for them.


This is also to kill the remnant cancer cells left behind the surgery.

Prognosis and Survival Rate

The prognosis of leiomyosarcoma depends on the stage of the cancer, the grade of the tumor and the general health of the patient. When it comes to general health, people aged more than 62 years and had previous intralesional surgery has poorer prognosis. Those who have a more extensive stage and grade of cancer have also the poorest prognosis because it already involves metastasis to other areas of the body. The most common metastatic site of Leiomyosarcoma are the lungs and the liver because of a large network of blood and lymph.

The 5 year survival rate of Leiomyosarcoma depends upon the stage. The following table summarizes the 5-year survival rates of patients according to stage:

Stage Percentage
Stage I 60%
Stage II 35%
Stage III 28%
Stage IV 15%

Despite these high survival rates within 5 years, the percentage of death from Leiomyosarcoma after some time is also high with an average of 85.5% of patients. Looking into this, it can be concluded that Leiomyosarcoma has higher death rates compared to other types of cancers such as breast cancer. Leiomyosarcoma of the soft tissues is actually one of the most aggressive soft tissue cancers causing its high mortality rates.

Staging of Leiomyosarcoma

Stage 1A

The tumour is low-grade and small (less than 5cm [2in]). It can be near the surface of the body (superficial) or deep within the body, but with no sign that it has spread to the lymph nodes or other parts of the body.

Stage 1B

The tumour is low-grade and large (more than 5cm [2in]). It is superficial with no sign it has spread to the lymph nodes or other parts of the body.

Stage 2A

The tumour is low-grade and large (more than 5cm [2in]). It is deep within the body, but has not spread to lymph nodes or other parts of the body.

Stage 2B

The tumour is high-grade and small (less than 5cm [2in]). It can be near the surface of the body or deep within the body, but has not spread to lymph nodes or other parts of the body.

Stage 2C

The tumour is high-grade, large, (more than 5cm [2in]) and superficial, but has not spread to lymph nodes or other parts of the body.

Stage 3

The tumour is high-grade, large (more than 5cm [2in]) and deep, but has not spread.

Stage 4

The tumour has spread to lymph nodes in the area or to any other part of the body. This is known as secondary or metastatic soft tissue sarcoma.

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22 comments on “Leiomyosarcoma – Survival Rate, Symptoms, Prognosis, Treatment
  1. Iva says:

    Thank you for this information. I wondered, is the article written by an MD? Also what are the sources for the data showing the percentage for survival?
    I will appreciate your time to bring more clarity.

  2. casey says:

    My mother has had leiomyosarcoma for 2 1/2 years. Her tumors have came back 4 times. Every time they have been removed. The last time she had it removed was december of 2012. She just found our her tumor has returned.. what’s the chances of survival? I fear death shes all I have but shes a fighter chemo does not work but she doesnt want to do it anyways because she says if she dies she doesnt want to die sick. Ive done research but nothing really gives me answers of the survival rate. She keeps telling me as long as they keep removing it she’ll live but I think she tells me this to keep me happy.. please someone give me an answer

  3. chavely says:

    i was recently diagnosed with leiomyosarcoma stage 2 grade 2, tumor was located in the retroperitoneal area, I had surgery and tumor was removed completely, I’m glad to say cancer cell did not spread to any of my organs. I was told this type of tumor usually grows back I understand it’s difficult to say when or where it will regrow but can anyone please tell me how long after the first surgery did the tumor reappear. I would also like to know what’s the average life spand for patients with this desease… I’d like to know as much as possible about this desease. I would appreciate any info.. Thank you and God Bless

    • Kristin Omack says:

      My mom was diagnosed in Feb and had surgery and they removed it all.But we just found out it returned after 3 months and the dr said chemo and radiation are not an option.He gave her meds to be as comfortable as possible.There is a 5 yr survival rate if your in good health but my mom has heart disease and and lung problems im also trying to find out as much as possible.good luck and god bless

  4. shaiju mathew. age 32. says:

    my cusin, shaiju mathew. recentely diagnosed with high grade leiomyosarcoma. tumor located in left side of the lower abdomina wall he had surgery and tumor removed. he had don the CT and MRI. report doctors not told the patient and relatives doctor told them he wanted 25 radiotherapy.and chemo. I,d like to knowas much as possible about this desease and survival rate?I would appreciate any info. thank you and GOD BLESS YOU.

  5. Anna says:

    My mom died of the cancer after a 3 year battle 15 years ago. That was after lots of Kemo, surgeries and meds. Nothing did much to help. I was hoping they had found something to cure this this after all this time it looks like nothing has be found.

  6. Marie G says:


    • Marcia says:

      I’ve had LMS removed from my left forearm and wrist.
      This was 3.5 years ago. I’ve been under close watch. There are concerns about a node in my lung that has increased in size. Addressing that with biopsy and removal. PET Scan has been done. Will get results after return from a planned vacation.
      Although a doctor has mentioned chemo, I’m getting second and possibly third look at this.
      Does anyone know of physicians in Texas that consider homeopathic or nutritional approach?
      Of course, I’ll look outside of Texas too!

  7. Sarah says:

    Hello, my dad has Leiomyosarcoma and I was wondering if there was anything that works. I learned that chemo doesn’t work but they are going to try it any way if I cannot find another idea for treatment. Please help me. I am only 13 and I don’t want to loose my dad.

    • Anne says:

      I was heartbroken reading your post.
      My husband has LMS for 3 years.
      all I can tell you enjoy the the time don’t give up hope, pray does wonderful things.
      I be praying for you and your Dad <3

    • carrie says:

      gleevec has been shown to be helpful in those cancers found in the abdomen. radiation and chemo are generally not helpful.

  8. kirubavathy says:

    My aunt had leiomyosarcoma which had been diagnosed after metastasis to all organs except brain at the age of 47 years.With one month history of cough breathlessness had undergone radiological investigations which showed secondaries lungs for she has been evaluated by radiological investigations and biopsy of muscle.she is on treatment now with poor prognosis.hope she should survive for atleast few years.

  9. Melody says:

    I have had leiomyasarcoma for 2 years. It started on my ovary. I had all my reproductive organs and everything around them removed in surgery. The first chemo killed what the surgery missed for 3 months. When it was found it was one huge tumor, it grew back has five small tumors. After 3 more months of chemo they doubled in size. I have had six different chemo meds, none are working. I was referred to a specialist at a cancer institute which had a list of a few more that might work, but once I use all those up I only have a six month life span with no chemo. I have began silently planning my own funeral as my husband has never even been to a funeral and would be lost without my help. The hardest part of it all….beyond the pain is being a burden on loved ones. I’ve always been the doer…very independent and strong minded. Now my mind and body and energy is all about gone. But I had a good life and am not scared for myself, I worry more about how my family will survive without me….I’m learning now that they will be fine…since most of my time is spent in the bed these days. God Bless you all.

    • Edwin Smith says:

      You are indeed a strong lady and I hope your family will be strong for you. God blessed me after my surgery and after 2 and a half years I am still clear. It was caught very early and only affected my big toe on left foot. It was removed with a bit of surrounding tissue and I needed no chemo. You will be in my thoughts and prayers. God bless you.

    • Kathleen says:

      God Bless you. For me, that is the time I cry when I think about my grandchildren…..still hopes for more than 2 years.

  10. Edwin Smith says:

    I had grade 3 leiomyosarcoma in the bone of my left big toe. Toe was removed 2 and a half years ago and so far thank God has not returned. I have chest x-rays every 3 months but recently have started having pain in foot again. Praying it is not back.

  11. Teri says:

    My mom had a tumor removed in December. Three months later her scans showed Stage 4 – LMS. After 6 weeks of chemo treatment, scans showed increase of 4%. She is doing another 6 weeks of chemo. Questions:
    1)If she stops chemo after this, what is her life span with the LMS being high grade and aggressive?
    2)If she continues with chemo with the low % increasse, what is her realistic life span?

  12. Kathleen says:

    Hi I was diagnosed with Retroperitoneal leiomyosarcoma back in December of 2013. 25 Days of radiation and a 12 hours surgery in May the tumor was removed (9.5 cm) as well as my right kidney, right ureter, part of the soas muscle and an artery right below the iliac artery. Was starting to get back to normal activity but had extreme fatigue. Got the results from my first scan and the tumors have reoccurred – one in my liver, one on my left side pelvic bone and in my lungs. Chemo is my only choice at this time…prognosis is 2 years with quality of life. I am 55, otherwise healthy, have 7 beautiful grandchildren and horses that are my loves….I’ve decided not to pay attention to prognosis and have asked for help from my energy healer as well as my acupuncturist….hoping for good results…good luck to all of you !

  13. Cynthia says:

    Hello. I was just diagnosed this month with leiomyosarcoma. I don’t know at what stage or grade the tumor is or even where it originated but am looking to get a second opinion soon to find the answers I need. The main doctor is saying time is of the essence with starting chemotherapy but I have not been given the answers yet that I need in order to make a good decision. I had another cancer 11 years ago that I had radiation and chemotherapy for and my doctor at the time said I was cancer free after 5 years. I had not had any symptoms of another possible cancer until just recently. I don’t wish to go through chemotherapy again unless I know that it will definitely help in some way. I was told by my current doctor that half the patients do not respond to the chemotherapy that has been used for this type of cancer at all while for the other half of patients, there might be some reduction in the size of the tumor. I have been told that the tumor has probably spread to my right leg. It has also been causing swelling of my right kidney. I had surgery recently to relieve the pressure from the tumor on my right kidney (a nephrostomy) and am feeling so much better as the tumor is no longer causing extreme pain by pressing on my right ureter. Does anyone know of any biologic medications that have been successful in treating late stage leiomyosarcoma cancer? I have been told my cancer is inoperable now. Just wish I had found it when it could still be removed as I am not looking forward to any form of chemotherapy or other treatments that may or may not work and would like to focus more on pain relief and quality of life at this point.

  14. Mark says:

    I was just diagnosed in December 2014.I felt a painful pea sized lump near my right knee & was told it was fatty tissue.After two & a half years I finally had it removed & was told it was a high grade leiomyosarcoma tumor.Just had a second surgery one week ago to take out surrounding tissue that may have been contaminated.Still waiting on results.Dr. appointment on February 9 for follow up on surgery.Hope to hear results then.I am absolutely terrified & hoped posting & sharing would help.The tumor was 1 centimeter.Don’t know if that is a good thing or not, being small.I just want to be able to see my ten year old daughter & two year old grandson grow up.

  15. Dianne says:

    I was diagnosed with stromal tumor 11 years ago, I had surgery to remove the 5 1/2 pound tumor. I refused chemo and radiation. I’ve been on gleevec 400mg for 10 years and there is no sign of it growing back. I take it every day.

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