Metastatic Cervical Cancer: What to Ask

This page is for people with advanced (metastatic or recurrent) cervical cancer and their families. It explains what the National Cancer Institute (NCI) lists for treatment and suggests questions to ask your care team.

For stage IVB and recurrent (returned) cancer, NCI gives five options:

• Immunotherapy
• Radiation with chemotherapy
• Drug treatment for symptom control
• Pelvic exenteration (surgery that removes organs in the pelvis)
• Early-phase clinical trials

NCI notes that these drug treatments are not expected to cure the cancer. They aim to ease symptoms and help people live longer.

That is not a reason to give up on treatment. It is a reason to ask what each treatment is for.

Pembrolizumab was approved for recurrent or spreading cervical cancer whose tumor shows PD-L1. PD-L1 is a protein on some cancer cells. The threshold NCI gives is a combined positive score of 1 or higher.

That score comes from staining a piece of your tumor in the lab. Ask whether the test was done, what the number was, and on which sample.

NCI describes a study in recurrent cervical cancer. It compared tisotumab vedotin with chemotherapy chosen by the doctor. Tisotumab vedotin was given by infusion (through a vein) every three weeks, at an amount based on body weight.

Eye problems were the side effect that stood out. NCI reports ocular (eye) events in 52.8 percent of people in that arm. Ask what eye monitoring and eye drops would be needed before you start.

A tumor in the pelvis can press on the ureter, the tube that carries urine from a kidney to the bladder. If that happens, ask whether the kidney needs draining and how that fits with other treatment.

Ask whether either kidney is blocked. Ask whether a stent or a drain through the skin is needed, and how soon.

Radiation is on NCI's list here. NCI says radiation can also be used to relieve symptoms and improve quality of life in advanced cervical cancer. Ask whether a short course aimed at the tumor itself would help you now.

Tell your team which symptom bothers you most, and make sure that symptom is named in the plan.

• What is my PD-L1 combined positive score?
• Does that open up pembrolizumab, alone or with chemotherapy?
• What is the goal of the treatment you are recommending?
• If chemotherapy stops working, is tisotumab vedotin an option?
• What eye monitoring would that need?
• Is either of my kidneys blocked right now?
• Can radiation help my bleeding while other treatment goes on?

Ask what happens if you say no to a given step. A good team will answer that without flinching.

• Call 911 or go to an emergency department if vaginal bleeding is heavy enough that pads cannot keep up, or if bleeding comes with dizziness, fainting or a racing heart. Go too if you cannot pass urine at all, or if you have severe breathlessness or chest pain. Do not drive yourself.
• Treat a temperature of 100.4°F (38°C) or higher as an emergency if you are having chemotherapy, chemoradiation, or tisotumab vedotin. Phone your cancer team the moment you see the reading, whatever the hour, rather than leaving it for a same-day call; CDC describes a fever during chemotherapy as a medical emergency because your infection defences are down. If nobody picks up quickly, head to an emergency department and say at the desk that you are on cancer treatment. A fever with no cancer treatment behind it can still go through the same-day route.
• Call your care team the same day if you have pain in your side or lower back with much less urine than usual, which can mean a ureter is blocked and the kidney behind it is backing up. If you are on tisotumab vedotin, call the same day for eye pain, redness, blurred vision or new sensitivity to light. That drug can damage the surface of the eye. Also call the same day for a blistering or peeling rash, or a new cough or breathlessness.
• Call your care team within a day or two if discharge becomes foul smelling, one leg is swelling, or bleeding is steady but light. Do the same for new numbness or tingling in your hands or feet, or for pelvic pain your current painkillers are no longer holding.

Cancer Staging and Biomarker Testing explain the terms behind a metastatic cervical cancer diagnosis. Clinical Trial vs Standard Treatment, Palliative Care, and Questions to Ask Your Doctor cover the choices that come next with metastatic cervical cancer.

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

• NCI PDQ — Cervical Cancer Treatment (Patient Version)
• NCI PDQ — Cervical Cancer Treatment (Health Professional Version)
• DailyMed — TIVDAK (tisotumab vedotin) label: ocular adverse reactions, hemorrhage, pneumonitis, severe cutaneous reactions, peripheral neuropathy
• NCI — Infections and Neutropenia during Cancer Treatment