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If you have symptoms of uterine sarcoma, the first step is to see your doctor.
Your doctor will ask you about your personal and family medical history. You also will be asked about any symptoms, risk factors, and other health problems. A general physical and a pelvic exam will be done to check if the uterus is larger than normal.
If your doctor suspects cancer based on your symptoms and/or exam, you may be told you need other tests and also be referred to a gynecologist or a doctor specializing in cancers of the female reproductive system (called a gynecologic oncologist).
To find the reason for the abnormal bleeding, a small piece of tissue will be taken from the lining of the uterus (endometrium) and looked at closely in the lab. The tissue can also be removed by dilation and curettage (D&C). See below for a description of how this is done.
These procedures let the doctor see if the bleeding is caused by an overgrowth of cells in the endometrium (hyperplasia) that's not cancer, endometrial carcinoma, uterine sarcoma, or some other problem. The tests will find endometrial stromal sarcomas, but not as many leiomyosarcomas (LMSs).
These tests don't find LMSs as often because these cancers start in the muscle layer of the wall of the uterus, not the inner lining. To be found by an endometrial biopsy or D&C, LMSs need to have spread from the middle (muscle) layer to the inner lining of the uterus. In most cases, the only way to diagnose a LMS is by removing it with surgery. Many uterine sarcomas are diagnosed during or after surgery for what's thought to be benign fibroid tumors.
In this procedure, a very thin, flexible tube is put into the uterus through the cervix. Then, using suction, a small sample or amount of the uterine lining (endometrium) is taken out through the tube. Suctioning takes about a minute or less and may be done more than once to get enough tissue. The discomfort is a lot like severe menstrual cramps and can be helped by taking a nonsteroidal anti-inflammatory drug like ibuprofen an hour before the biopsy, if approved by your doctor. This procedure is usually done in the doctor's office.
This procedure allows doctors to look inside the uterus. A thin long camera (called a hysteroscope) that is either soft and flexible or rigid is put into the uterus through the cervix. To get a better view, the uterus is then expanded by filling it with salt water (saline) or gas. This lets the doctor see and take out anything that looks abnormal, such as a cancer or a polyp, or take a tissue sample (biopsy). If the doctor is just taking a look, this procedure can be done with the patient awake, using local anesthesia (numbing medicine). But if a lot of tissue, a polyp, or a mass has to be removed, general or regional anesthesia is used. (General anesthesia means you are given drugs that put you into a deep sleep and keep you from feeling pain. Regional anesthesia is a nerve block that numbs one area of the body).
If an endometrial biopsy is not possible or the results of the endometrial biopsy are not clear (meaning they can't tell for sure if there is cancer), a procedure called dilation and curettage (D&C) is usually done. A D&C is a surgical procedure that is usually done in the outpatient surgery area of a clinic or hospital. It's done while the woman is under general or regional anesthesia or conscious sedation (medicine is given into a vein to make her drowsy). In a D&C, the cervix is dilated (opened) and a special surgical tool is used to remove the endometrial tissue from inside the uterus so it can be checked in the lab. A hysteroscopy may be done as well. Some women have mild-to-moderate cramping and discomfort after this procedure.
If a woman has signs or symptoms that suggest uterine sarcoma has spread to the bladder or rectum, imaging can help to confirm this. Rarely, a camera or lighted tube might be used to look inside of these organs. These exams are called cystoscopy (to look in the bladder) and proctoscopy (to look in the rectum), and might be done only if imaging is not helpful.
Any tissue or biopsy samples are looked at closely in the lab to see if there is cancer. If cancer is found, the lab report will say if it's a carcinoma or sarcoma, what type it is, and its grade.
Cancer cells are given a grade when they are removed from the body and checked in the lab. The grade is based on how much the cancer cells look like normal cells. The grade is used to help predict your outcome (prognosis) and to help figure out what treatments might work best.
For example, high-grade sarcomas tend to grow and spread faster than low-grade sarcomas.
The tissue sample or biopsy might also be tested to see if the cancer cells have estrogen receptors and progesterone receptors. These hormone receptors are found on many endometrial stromal sarcomas and some leiomyosarcomas. Cancers with estrogen receptors are more likely to grow with estrogen, while those with progesterone receptors often don't grow if exposed to progesterone. These cancers may stop growing (or even shrink) when treated with certain hormone drugs. Hormone drugs may also be used to prevent the cancer from coming back after initial treatment (recurrence) if the cancer is found to have estrogen or progesterone receptors. Checking for these receptors helps predict which cancers might benefit from hormone treatment.
Ultrasound tests use sound waves to take pictures of parts of the body. For a transvaginal ultrasound, a probe that gives off sound waves is put into the vagina. The sound waves are used to make images of the uterus and other pelvic organs. These images can often show if there's a tumor or lump and if it invades the myometrium (muscle layer of the uterus).
For an sonohysterogram or saline infusion sonogram, salt water (saline) is put into the uterus through a small tube before or during the transvaginal ultrasound. This lets the doctor see changes in the uterine lining more clearly.
The CT scan is an x-ray test that makes detailed cross-sectional images of your body. CT scans are rarely used to diagnose uterine sarcoma, but they might be helpful in seeing if the cancer has spread to other organs.
CT-guided needle biopsy: CT scans can also be used to guide a biopsy needle exactly into an abnormal area or tumor. For this procedure, the patient remains on the CT scanning table while the doctor moves a biopsy needle through the skin and toward the tumor. CT scans are repeated until the needle is inside the tumor. A needle biopsy sample is then removed and looked at closely in the lab. This isn’t done to biopsy tumors inside the uterus, but might be used to biopsy areas that look like metastasis (cancer spread).
MRI scans also make cross-section pictures of your insides but use radio waves and strong magnets instead of x-rays. An MRI scan can help tell if a uterine tumor looks like cancer, but a biopsy is still needed to tell for sure. It can also help find out if any cancer has been left behind after surgery or if the cancer has grown into nearby structures which can help in making a treatment plan.
MRI scans are also very helpful in looking for cancer that has spread to the brain and spinal cord.
In a PET scan, a slightly radioactive form of sugar (known as FDG) is injected into the blood and collects mainly in cancer cells.
An x-ray of the chest might be done to see if a uterine sarcoma has spread to the lungs and as part of the testing before surgery. If something suspicious is seen, your doctor may order more tests.
The American Cancer Society medical and editorial content team
Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as editors and translators with extensive experience in medical writing.
Gaillard S and Secord AA. Staging, treatment, and prognosis of endometrial stromal sarcoma and related tumors and uterine adenosarcoma. In: Chakrabarti A and Vora SR, eds. UpToDate. Waltham, Mass.: UpToDate, 2021. https://www.uptodate.com. Accessed June 7, 2022.
Memarzadeh S and Berek JS. Uterine sarcoma: Classification, epidemiology, clinical manifestations, and diagnosis. In: Chakrabarti A, ed. UpToDate. Waltham, Mass.: UpToDate, 2021. https://www.uptodate.com. Accessed June 7, 2022.
National Cancer Institute. Uterine Sarcoma Treatment (PDQ®)–Patient Version. April 8, 2022. Accessed at https://www.cancer.gov/types/uterine/patient/uterine-sarcoma-treatment-pdq on June 7, 2022.
National Comprehensive Cancer Network (NCCN). NCCN Clinical Practice Guidelines in Oncology. Uterine Neoplasms, Version 1.2022 – November 4, 2021. Accessed at https://www.nccn.org/professionals/physician_gls/pdf/uterine.pdf on June 7, 2022.
Puliyath G, Nair MK. Endometrial stromal sarcoma: A review of the literature. Indian J Med Paediatr Oncol. 2012;33(1):1-6. doi:10.4103/0971-5851.96960.
Last Revised: September 20, 2022
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