Newly Diagnosed With Uterine Cancer: First Steps

This page is for people just diagnosed with uterine (endometrial) cancer and those helping them. It covers cell types, how the diagnosis is made, molecular tests, surgery and staging, and when to get help sooner.

Most uterine cancer starts in the endometrium. That is the lining of the uterus. NCI sorts these cancers by cell type. The mix is lopsided:

• Endometrioid: about 75 percent.
• Mixed types: about 10 percent.
• Uterine papillary serous: under 10 percent.
• Clear cell: about 4 percent.
• Carcinosarcoma: about 3 percent.
• Mucinous: about 1 percent.
• Squamous cell and undifferentiated: each under 1 percent.

Find your cell type on the pathology report first. Endometrioid cancers behave very differently from the rest. Serous, clear cell, and carcinosarcoma are treated harder.

NCI calls irregular vaginal bleeding the most common first sign. It usually shows up early in the disease.

That is why SEER, NCI's cancer statistics program, reports 67.0 percent of these cancers are found while still local. Any bleeding after menopause needs a workup. So does bleeding between periods before menopause.

One correction, early. A Pap smear is not a reliable screening test here. A normal Pap does not rule this out.

NCI lists these steps:

• Pelvic examination.
• Transvaginal ultrasound. A probe goes in the vagina to measure the lining.
• Endometrial biopsy. NCI calls this necessary for a definite diagnosis.
• Dilatation and curettage, or D and C, when a biopsy is not enough.
• Hysteroscopy. A thin camera goes into the uterus for a direct look.

An office biopsy takes minutes. If yours gave no answer, or the bleeding kept on, ask whether a D and C or hysteroscopy comes next, rather than repeating the same test.

Most newly diagnosed patients do not know to ask for this. The Cancer Genome Atlas sorted these cancers into molecular groups. Each group carries a different outlook:

• POLE ultramutated. NCI says this subtype matters, and that added therapy is avoided. In other words, it can mean less treatment, not more.
• Microsatellite instability hypermutated, which corresponds to mismatch repair deficient, or dMMR.
• Copy number low, also called no specific molecular profile, or NSMP. Intermediate outlook.
• Copy number high, which corresponds to p53 abnormal. NCI associates this with a poor prognosis.

Two of those change treatment directly. A POLE result may spare you chemotherapy or radiation. A dMMR result opens the door to immunotherapy. It also raises the Lynch syndrome question.

Ask whether mismatch repair and p53 testing were done on your sample. Then ask where those results are.

NCI names the standard operation. It is a total hysterectomy with bilateral salpingo-oophorectomy. That means removing the uterus, cervix, both tubes, and both ovaries. It can be done as open surgery or through small cuts, using a laparoscope.

The laparoscopic approach is not a shortcut. NCI reports that trials, mostly the GOG-LAP2 trial, found similar survival with laparoscopy and open surgery.

For lymph nodes, NCI calls sentinel node biopsy an adequate option. The alternative is removing the whole chain of nodes. A sentinel node is the first node a tumor drains into.

Ask which approach your surgeon plans. Ask who will do it. Gynecologic oncologists are the specialists trained for this operation.

This cancer is staged during surgery, using the FIGO system. The 2023 version changed the rules. Stage now depends on cell type and molecular findings too, not just how far the tumor spread.

In broad terms:

• Stage I stays in the body of the uterus. Stage IA covers disease limited to the endometrium in a nonaggressive type. Stage IB covers nonaggressive types that invade half or more of the muscle wall.
• Stage II means the tumor invades the cervical stroma. That is the supporting tissue of the cervix. Nothing has spread outside the uterus.
• Stage III means local or regional spread.
• Stage IV means spread to the bladder lining, the bowel lining, or to distant sites.

The rules changed recently. So ask which FIGO version your stage came from.

NCI notes that most cases are found early. Those can be treated with surgery alone. That is the most reassuring line in the whole summary.

For higher-risk stage I and II disease, more may follow. Options include chemotherapy after surgery, with or without radiation. Vaginal brachytherapy is a common lighter option. It places a radiation source inside the vagina to treat the surgical cuff.

For advanced or recurrent disease, NCI lists chemotherapy, radiation therapy, hormone therapy, and immunotherapy.

One immunotherapy is worth naming, since it is now used up front. Dostarlimab, sold as Jemperli, is an antibody that binds PD-1 on T cells. NCI lists it for endometrial cancer that has spread past the uterus or come back. It is given with carboplatin and paclitaxel, then continued alone. It is also approved by itself for dMMR disease that got worse during or after platinum chemotherapy.

Hormone receptor results matter too. NCI reports a sharp split by progesterone receptor level. At 100 or greater, 3-year disease-free survival was 93 percent. Below 100, it was 36 percent.

NCI's risk list is long. It includes estrogen therapy after menopause without progesterone. It includes tamoxifen therapy, obesity, metabolic syndrome, and diabetes. It includes never having given birth, early first period, and late menopause. It also includes polycystic ovary syndrome, Lynch syndrome, and family history.

Lynch syndrome is inherited. It also raises the risk of colon and other cancers. If your tumor is mismatch repair deficient, ask for genetic counseling. The answer affects your relatives, and your own colon screening.

SEER data for uterine cancer, with the survival figures drawn from people diagnosed between 2016 and 2022:

• An estimated 68,270 new cases and 14,450 deaths in 2026 — an American Cancer Society projection that SEER carries.
• 3.2 percent of all new cancer diagnoses.
• Median age at diagnosis: 64.
• 5-year relative survival overall: 80.9 percent.
• By stage: localized 94.9 percent, regional 70.1 percent, distant 19.9 percent.

Two trends deserve attention. New case rates rose an average of 0.7 percent a year over 2014 to 2023. Death rates rose an average of 1.3 percent a year over 2015 to 2024.

• Call 911 or go to an emergency department if you have chest pain or your breath goes short without warning. CDC lists uterine cancer among the cancers with a greater risk of blood clots, and says to seek immediate care for signs of a clot in the lung. Do not drive yourself.
• Call 911 or go to an emergency department if bleeding soaks through a pad in an hour or less. Do not drive yourself.
• Call your care team right away, day or night, if you run a temperature of 100.4°F (38°C) or higher while you are receiving chemotherapy, such as carboplatin and paclitaxel after surgery. Those drugs lower the white cells that fight infection, and CDC warns that a fever during chemotherapy is a medical emergency. CDC says to call your doctor immediately. If you cannot get hold of them quickly, go to an emergency department and say you are on chemotherapy.
• Call your care team right away if one leg turns swollen, warm, or sore. CDC says to alert your cancer doctor as soon as possible about these signs of a clot.
• Call your care team right away if you run that same temperature, notice foul-smelling discharge, or find your pelvic pain building after surgery, and chemotherapy has not started.

• What is my exact cell type, and is it considered aggressive?
• Were POLE, mismatch repair, and p53 tested? What did they show?
• What FIGO stage am I, and under which version of the system?
• Will a gynecologic oncologist perform my surgery?
• Are you planning sentinel node biopsy or a full lymph node dissection?
• Based on my results, will I need anything after surgery?

• https://www.cancer.gov/types/uterine/hp/endometrial-treatment-pdq
• https://seer.cancer.gov/statfacts/html/corp.html
• https://www.cancer.gov/about-cancer/treatment/drugs/dostarlimab-gxly
• https://www.cdc.gov/cancer-preventing-infections/patients/fever.html