Diagnósticos

To diagnose uterine sarcoma, you may need a physical exam, imaging tests and testing of a tissue sample, called a biopsy.

Before surgery, it can be hard to tell a uterine sarcoma from a uterine fibroid. Fibroids are noncancerous growths of uterine muscle. Sarcomas are cancer. The two can cause similar symptoms and can look alike on imaging tests.

Imaging tests

An ultrasound often is one of the first tests used to look at a growth in the uterus. It can show the growth's size and location. But an ultrasound alone typically cannot confirm whether a growth is a fibroid or a uterine sarcoma.

An MRI can give more detail about a growth in the uterus. Some MRI findings may suggest sarcoma. Even so, fibroids and sarcomas can look alike. A final diagnosis still requires examination of tumor tissue.

Other imaging tests, such as a CT scan, may be used to look for cancer that has spread.

Tissue testing

A doctor called a pathologist examines tumor tissue under a microscope. This shows whether the tissue is cancer. If it is cancer, it shows what type of uterine sarcoma it is. For some people, uterine sarcoma is found after surgery for what was thought to be a fibroid or another noncancerous condition.

Tests on the tumor also may look for hormone receptors or gene changes. The results can help guide treatment.

Grades

Grade describes what the cancer cells look like and gives clues about how quickly the cancer may grow and spread. Grade and stage are different. Grade describes the cancer cells. Stage refers to how much cancer is in the body and whether it has spread.

Grade is especially important for endometrial stromal sarcoma (ESS). ESS may be low grade or high grade.

  • Low-grade ESS. This type generally grows slowly. These tumors often have estrogen and progesterone receptors. This may make hormone therapy a treatment option. Low-grade ESS can come back many years after treatment, so long-term follow-up may be needed.
  • High-grade ESS. This type tends to grow and spread more quickly. The outlook is generally less favorable than for low-grade ESS. High-grade ESS is more often found when the tumor is already large or has spread. The outlook also depends on how far the cancer has spread.

Other types of uterine sarcoma do not always fit into the same low-grade and high-grade groups used for ESS. Your care team can explain whether grade is important for your type of uterine sarcoma and what it means for you.

Stages

A cancer's stage describes how much cancer is in the body and whether it has spread. Your care team uses the stage to help plan treatment. The stage also can give information about outlook.

Symptoms do not reliably show a cancer's stage. Imaging, surgery and other tests are used to find out how far the cancer has spread.

There are different ways to describe the stage of uterine sarcoma. The stage descriptions here are for uterine leiomyosarcoma and endometrial stromal sarcoma.

For these two types, your care team may use the International Federation of Gynecology and Obstetrics (FIGO) system or the American Joint Committee on Cancer system. The two systems use similar information. They consider the size of the tumor, whether nearby lymph nodes contain cancer and whether cancer has spread to other parts of the body.

If you have another type of uterine sarcoma, your care team can explain how its stage is described and what that means for you. You do not need to memorize the staging system.

Stage 1

What it means: The cancer is limited to the uterus.

  • Stage 1A. The tumor is 2 inches (5 centimeters) or smaller.
  • Stage 1B. The tumor is larger than 2 inches (5 centimeters).

Treatment: Surgery is the main treatment for many stage 1 uterine sarcomas. After surgery, some people may not need more treatment. This depends on the type and other features of the tumor.

Stage 2

What it means: The cancer has grown outside the uterus but is still within the pelvis.

Treatment: Surgery may be an important part of treatment. You may or may not need treatment after surgery. This depends on the type of uterine sarcoma and whether the cancer was completely removed. Other tumor features can affect the chance that the cancer will come back. Cancer that comes back is called recurrence.

Stage 3

What it means: The cancer has spread into tissues in the abdomen or to nearby lymph nodes.

Treatment: Surgery may be an option if the cancer can be removed. You may need other treatment too. The type of uterine sarcoma helps guide this choice. Options may include chemotherapy, hormone therapy, targeted therapy, biological therapy for cancer or radiation therapy.

Stage 4

What it means: Stage 4 cancer has spread farther.

  • Stage 4A. The cancer has grown into the bladder or rectum.
  • Stage 4B. The cancer has spread to distant parts of the body, such as the lungs, bones or liver.

Treatment: Treatment for stage 4 uterine sarcoma depends greatly on the type, where the cancer has spread and whether surgery can remove it. Systemic medicines often are part of treatment. These medicines travel through the body.

Tratamientos

Treatment for uterine sarcoma depends on the type, grade and stage of the cancer. Your health and preferences matter too.

Your care may involve several cancer specialists. A gynecologic oncologist treats cancers of the reproductive system. A medical oncologist treats cancer with medicines. A radiation oncologist treats cancer with radiation.

Surgery

Surgery is the main treatment for most uterine sarcomas that are limited to the uterus and can be completely removed. A total hysterectomy removes the uterus and cervix. The surgery may be done through an incision in the abdomen, called an abdominal hysterectomy. The ovaries and fallopian tubes also may be removed. This depends on the type of sarcoma and your circumstances.

Nearby lymph nodes are not removed as part of every uterine sarcoma surgery. They may be removed if imaging or surgery shows that the lymph nodes appear to have cancer.

Chemotherapy

Chemotherapy uses medicines that kill cancer cells. It may be used for some high-grade, advanced or recurrent uterine sarcomas. Recurrent means the cancer has come back after treatment.

Treatment differs by type. Chemotherapy usually is not the first treatment used for low-grade ESS because it typically doesn't work.

Hormone therapy

Hormone therapy is used mainly for low-grade ESS. These cancers often have receptors for estrogen and progesterone, hormones that can affect how the cancer grows. Hormone therapy works by lowering estrogen levels or blocking the effects of hormones on the cancer.

Depending on the medicine, hormone therapy may be taken as a pill or given as an injection. Because these treatments change or block the effects of reproductive hormones, their side effects can be more significant than side effects commonly associated with hormonal birth control. Possible effects include hot flashes, vaginal dryness, fatigue, lower sexual desire, joint or muscle pain, and bone thinning. Some progestins also can cause increased appetite, weight gain and changes in blood sugar. Rarely, they can cause blood clots.

Radiation therapy

Radiation therapy uses high-energy beams or particles to damage cancer cells. It may be used after surgery in some situations, when surgery is not possible or to ease symptoms from advanced cancer.

Radiation may lower the chance that some uterine sarcomas will return in the pelvis. But the available evidence does not clearly show that radiation helps people live longer.

Targeted therapy and immunotherapy

Targeted medicines act on specific features of cancer cells. Immunotherapy helps the immune system recognize or attack cancer cells.

These treatments may be options for some advanced uterine sarcomas or cancers that have come back. The options depend on the cancer subtype and tumor test results.

Survival rates

Survival statistics can be difficult to read, especially soon after a cancer diagnosis. These numbers describe what happened to groups of people in the past. They cannot predict exactly what will happen to you.

Your outlook depends on many things, including the type and stage of uterine sarcoma, your overall health, the treatments available to you, and how well the treatment works to kill the cancer cells. Your cancer care team can help you understand what these numbers may mean for your situation.

5-year relative survival rates

A five-year relative survival rate compares people who have uterine sarcoma with people in the general population. The U.S. data is based on people diagnosed from 2015 through 2021.

These data group cancer by how far it has spread:

  • Localized. The cancer is only in the uterus.
  • Regional. The cancer has spread to nearby areas.
  • Distant. The cancer has spread to distant parts of the body.
  • All stages combined. This includes data from all three groups.

For uterine leiomyosarcoma, five-year relative survival is:

  • Localized. 61%.
  • Regional. 28%.
  • Distant. 13%.
  • All stages combined. 38%.

For low-grade endometrial stromal sarcoma, five-year relative survival is:

  • Localized: 98%.
  • Regional: 88%.
  • Distant: 78%.
  • All stages combined: 93%.

For undifferentiated uterine sarcoma, five-year relative survival is:

  • Localized: 73%.
  • Regional: 38%.
  • Distant: 17%.
  • All stages combined: 46%.

High-grade endometrial stromal sarcoma tends to have an outlook more like undifferentiated uterine sarcoma than low-grade endometrial stromal sarcoma.

What about uterine adenosarcoma?

Uterine adenosarcoma is one type of uterine sarcoma. The U.S. data does not give a separate survival rate for adenosarcoma.

What survival rates can and can't tell you

Survival rates describe what happened to groups of people who were diagnosed and treated in the past. They can give you a general idea of what to expect, but they cannot predict exactly what will happen to you. Treatments also continue to change, so outcomes today may be different.

Estrategias de afrontamiento y apoyo

Learning that you have uterine sarcoma can bring a lot of new information at once. You do not need to understand everything right away. Your care team will help you learn what type of uterine sarcoma you have and what it means for your care.

Living with a rare cancer can bring uncertainty and stress. Learning about your type of uterine sarcoma and writing down questions for your care team may help. Ask your cancer care team about support and services that fit your needs. These may include counseling, oncology social work, cancer or sarcoma support groups, and peer support. Your care team also can help with practical concerns related to treatment and follow-up.

Preparación para la consulta

If you have symptoms that may be caused by uterine sarcoma, you may first see a healthcare professional who provides gynecologic care. If cancer is suspected or diagnosed, you may be referred to a gynecologic oncologist.

What you can do

Before your appointment:

  • Write down your symptoms, when they started and whether they have changed.
  • Make a list of the medicines, vitamins and supplements you take.
  • Write down any previous cancer treatments, including radiation therapy or tamoxifen.
  • Gather information about cancers or inherited cancer syndromes in your family.
  • Write down questions you want to ask.
  • Consider bringing someone you trust to your appointment. Choose someone who is a good listener and can help take notes. Having another person listen and take notes may help you remember and understand what was discussed.

Questions to ask may include:

  • What type of uterine sarcoma do I have?
  • What is the cancer's grade?
  • What is the cancer's stage?
  • Has the cancer spread outside the uterus?
  • What tests do I need?
  • What treatment do you recommend and why?
  • Do I need to see other cancer specialists?
  • Should I consider a clinical trial?
  • What does my diagnosis mean for my outlook?
  • Is genetic counseling or genetic testing right for me?
  • Where can I find support for people with sarcoma?

What to expect from your doctor

Your healthcare professional may ask:

  • When did your symptoms begin?
  • Have the symptoms changed over time?
  • Have you had vaginal bleeding after menopause or bleeding between periods?
  • Have you noticed pelvic pain, pressure or a lump?
  • Have you had radiation therapy to the pelvis?
  • Have you taken tamoxifen?
  • Have any close biological relatives had sarcoma or an inherited cancer syndrome?