Endometrial Cancer Recurrence: What to Ask

This page is for people whose endometrial cancer may have come back, or who are watching for it after treatment. It covers warning signs, how a recurrence is found, treatment options NCI describes, and questions to bring to your team.

The American Cancer Society (ACS) lists warning signs after endometrial cancer treatment. It says to see your doctor right away, and not wait for your next appointment, if you notice:

• Bleeding from the vagina, bladder, or rectum.
• Decreased appetite or weight loss you cannot explain.
• Pain in the pelvis, hips, belly, or back.
• A cough or feeling short of breath.
• Swelling in your belly or legs.

After a hysterectomy there is no period to explain away bleeding. Call about any bleeding.

NCI gives similar advice in a different setting. A woman taking tamoxifen who has abnormal vaginal bleeding should have a follow-up exam and a biopsy of the lining if needed. That guidance is about tamoxifen, not about follow-up after treatment. Ask your own team what their plan is for checking bleeding.

ACS says that if symptoms or the exam suggest the cancer may have come back, your team may order scans, a CA 125 blood test, or a biopsy. ACS also says that without symptoms or exam changes, routine blood tests and scans are not needed.

So the pelvic exam and your own report carry a lot of weight. ACS adds that if endometrial cancer does come back, it is most likely within the first few years after treatment.

Brachytherapy is radiation placed inside the body, close to the tumor. For stage I disease, NCI says vaginal brachytherapy had fewer bowel side effects and better quality of life than external beam radiation, with no difference in vaginal recurrence at 5 years. NCI calls it the preferred option after surgery for stage I.

NCI does not give rules here for recurrence. If you had radiation before, ask exactly where the beams went. Ask whether more radiation is possible.

NCI's professional summary describes four molecular groups in this cancer. One is the POLE group. A POLE mutation is linked to a good prognosis, and NCI says adjuvant therapy (extra treatment after surgery) is avoided for it. Whether that applies to you depends on the rest of the pathology, so ask rather than assume.

Two trials are described by NCI. In one, called KEYNOTE-775, pembrolizumab and lenvatinib were compared with chemotherapy. Women had advanced or recurrent cancer that grew after a platinum-based treatment. In the other, called RUBY, dostarlimab was added to chemotherapy. The gain was largest in women whose tumor had a fault in mismatch repair (the system cells use to fix mistakes in their DNA).

Both trials sorted women by mismatch repair status. So ask whether yours has been done, and what it showed. FDA labels say which uses are approved. Your team decides what fits you.

• Which finding started this: bleeding, an exam, or a scan?
• Will you biopsy it before changing anything?
• Is it only at the top of the vagina, or beyond the pelvis?
• Have I had radiation there before? Can I have it now?
• What did my mismatch repair and POLE tests show?
• Does that make dostarlimab or pembrolizumab an option?
• Is surgery still on the table, or is this a drug decision?

Ask which result is still pending. Ask whether waiting for it changes anything, and ask for the plan in the visit notes.

• Call 911 or go to an emergency department if vaginal bleeding soaks through a pad and does not slow, or you feel faint or pass out with it. Do the same for sudden shortness of breath, sharp chest pain, or coughing up blood. MedlinePlus says to call 911 for these signs of a clot in the lung. Do not drive yourself.
• Call your care team right away if vaginal bleeding or spotting starts again, or you have bleeding from the bladder or rectum. Also call right away for new pelvic, hip, belly or back pain, a new cough, weight loss, swelling in your belly, or one leg that becomes swollen, red, or painful. ACS says to see your doctor right away for these.
• Call your care team right away, day or night, if you are on chemotherapy or have low white blood cell counts and you have a temperature of 100.4°F (38°C) or higher, chills, a sore throat, mouth sores, burning when you urinate, or redness where a catheter enters your body. A normal temperature is not a reason to wait. CDC says to call your doctor immediately for a fever during chemotherapy. NCI says infections during cancer treatment can be life threatening. If you cannot reach your team, go to the nearest emergency department.
• Call your care team within a day or two if vaginal discharge changes, urinating becomes difficult or painful, sex becomes painful, or your bowel or bladder habits change.

Cancer Staging and Biomarker Testing explain the terms that come up most when endometrial cancer comes back. Clinical Trial vs Standard Treatment, Palliative Care, and Questions to Ask Your Doctor cover the decisions that follow an endometrial cancer recurrence.

These questions were drawn from current patient guidance for endometrial cancer:

• NCI PDQ — Endometrial Cancer Treatment (Patient Version)
• NCI PDQ — Endometrial Cancer Treatment (Health Professional Version), molecular classification, radiation and immunotherapy trials
• NCI — Drugs Approved for Endometrial Cancer
• American Cancer Society — Follow-up Care After Endometrial Cancer Treatment
• MedlinePlus — Pulmonary embolus
• CDC — Watch Out for Fever
• NCI — Infection and Neutropenia during Cancer Treatment