What is uterine sarcoma?

Cancer starts when cells change (mutate) and grow out of control. The changed (abnormal) cells often grow to form a lump or mass called a tumor. Cancer cells can also grow into (invade) nearby areas. And they can spread to other parts of the body. This is called metastasis.

Uterine sarcoma is a type of cancer that starts in the muscular wall of the uterus (myometrium). 

The uterus is made up of 3 layers:

• Endometrium. This is the inner lining.

• Myometrium. This is the thick middle muscle layer.

• Serosa. This is the outer smooth layer.

Most cancers in the uterus are not uterine sarcoma. They are endometrial cancers. They start in the inner lining of the uterus.

The uterus is an organ that's part of the female reproductive system. You may know it as the womb. The uterus is usually pear-shaped and about the size of a fist. It's in the lower belly (pelvic area), between your bladder and your rectum. The uterus protects a growing baby during pregnancy. During labor, the myometrium muscle tissue helps push the baby out through the cervix. The smooth serosa makes it easy for the uterus to move in the pelvis as needed.

Who is at risk for uterine sarcoma?

A risk factor is anything that may increase your chance of having a disease. The exact cause of someone’s cancer may not be known. But risk factors can make it more likely for a person to have cancer. Some risk factors may not be in your control. But others may be things you can change.

The risk factors for uterine sarcoma include:

• Radiation therapy to the pelvis

• Being African American

• Having had retinoblastoma

• Taking the medicine Tamoxifen

Talk with your healthcare provider about your risk factors for uterine sarcoma and what you can do about them.

Can uterine sarcoma be prevented?

Researchers don’t yet know how to prevent this type of cancer.

What are the symptoms of uterine sarcoma?

The main symptom you may notice is unusual vaginal bleeding or other vaginal discharge. After menopause, it’s not normal to have any amount of vaginal bleeding. If you have bleeding after menopause, be sure to tell your healthcare provider. Other rare but possible symptoms include:

• Pain or a feeling of fullness in the pelvic area or lower abdomen (belly)

• A mass or tumor that can be felt

These may be caused by other health problems. But it's important to see your healthcare provider if you have these symptoms. Only a healthcare provider can tell if you have cancer.

How is uterine sarcoma diagnosed?

If your healthcare provider thinks you may have uterine sarcoma, you will need certain exams and tests to be sure. Your healthcare provider will ask you about your health history, your symptoms, risk factors, and family history of disease. A physical exam and pelvic exam will be done. You may also have one or more of these tests:

• Pap test

• Transvaginal ultrasound

• Endometrial biopsy

• Dilation and curettage (D&C)

• Hysteroscopy

A biopsy can show if you have cancer and, if so, the type of cancer. It's done by taking out tiny pieces of tissue that are then tested for cancer cells.

After a diagnosis of uterine sarcoma, you may need other tests, like blood tests, X-rays, or imaging scans. These help your healthcare providers learn more about the cancer. They can help find the stage of the cancer. The stage is how much cancer there is and if and how far it has spread (metastasized) in your body. It's one of the most important things to know when deciding how to treat the cancer.

Once your cancer is staged, your healthcare provider will talk with you about what the stage means for your treatment. Be sure to ask your healthcare provider to explain the stage of your cancer to you in a way you can understand.

How is uterine sarcoma treated?

Your treatment choices depend on your overall health, the type of uterine sarcoma you have, test results, and the stage of the cancer. The goal of treatment may be to cure you, control the cancer, or help ease problems caused by the cancer. Talk with your healthcare team about your treatment choices, the goals of treatment, and what the risks and side effects may be.

Types of treatment for cancer are either local or systemic. Local treatments remove, destroy, or control cancer cells in 1 area. Systemic treatments are used to destroy or control cancer cells that may have traveled around your body. 

Local treatments for uterine sarcoma include:

• Surgery, such as a hysterectomy (removal of the uterus)

• Radiation therapy

Systemic treatments include:

• Hormone therapy

• Chemotherapy

• Targeted therapy

• Immunotherapy

You may have just 1 treatment or a combination of treatments.

Treatments before surgery are called neoadjuvant treatment. For instance, you may get radiation, chemotherapy, or hormone therapy before surgery. These treatments may help shrink the tumor and make it easier to remove.

You might need more treatment after surgery. This is called adjuvant treatment. For example, you may get radiation, chemotherapy, or hormone therapy after you've healed from surgery. The goal is to kill any cancer cells that may be left in your body. Even if there's no sign of cancer cells, your healthcare provider may still advise adjuvant treatment. It helps reduce the risk that the cancer may come back or spread.

Talk with your healthcare providers about your treatment options. Make a list of questions. Think about the benefits and possible side effects of each option. Talk about your concerns with your healthcare provider before making a decision.

What are treatment side effects?

Cancer treatment, such as chemotherapy and radiation, can damage normal cells. This causes side effects like hair loss, mouth sores, and vomiting. Talk with your healthcare provider about side effects you might have and ways to manage them. There may be things you can do and medicines you can take to help prevent or control side effects. Be sure you understand how treatment will affect your ability to have children (fertility).

Coping with uterine sarcoma

Many people feel worried, depressed, and stressed when dealing with cancer. Getting treatment for cancer can be hard on your mind and body. Keep talking with your healthcare team about any problems or concerns you have. Work together to ease the effect of cancer and its symptoms on your daily life.

Here are tips:

• Talk with your family or friends.

• Ask your healthcare team or social worker for help.

• Speak with a counselor.

• Talk with a spiritual advisor, such as a minister or rabbi.

• Ask your healthcare team about medicines for depression or anxiety.

• Keep socially active.

• Join a cancer support group.

Cancer treatment is also hard on the body. To help yourself stay healthier, try to:

• Eat a healthy diet, with as many protein foods as possible.

• Drink plenty of water, fruit juices, and other liquids.

• Keep physically active. Ask your healthcare provider what activities are safe for you.

• Rest as much as needed.

• Talk with your healthcare team about ways to manage treatment side effects.

• Take your medicines as directed by your team.

When should I call my healthcare provider?

Your healthcare provider will talk with you about when to call. You may be told to call if any of the following occur:

• New symptoms or symptoms that get worse

• Signs of an infection, such as a fever

• Side effects of treatment that affect your daily function or don't get better with treatment

Ask your healthcare provider what signs to watch for, and when to call. Know how to get help after office hours and on weekends and holidays.

Key points about uterine sarcoma

• Uterine sarcoma is a type of cancer that starts in the muscular wall of the uterus (myometrium).

• The risk factors for uterine sarcoma include radiation to the pelvis and being African American.

• There are no screening tests for uterine sarcoma for women who don’t have symptoms. But regular pelvic exams and Pap smears can help find problems.

• The main symptom you may notice is unusual vaginal bleeding or other vaginal discharge.

• Treatments for uterine sarcoma include surgery, radiation, hormone therapy, and chemotherapy.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

• Know the reason for your visit and what you want to happen.

• Before your visit, write down questions you want answered.

• Bring someone with you to help you ask questions and remember what your provider tells you.

• At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new directions your provider gives you.

• Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.

• Ask if your condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if you do not take the medicine or have the test or procedure.

• If you have a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your healthcare provider if you have questions.