Metastatic Vulvar Cancer: What to Ask

This page is for people with vulvar cancer that has spread or come back, and their families. It explains what the evidence says and suggests questions for your care team.

Vulvar cancer is uncommon. The American Cancer Society estimates 7,130 new cases and 1,750 deaths in the United States in 2026, as published by SEER. It makes up about 6% of cancers of the female genital system. More than 90% of invasive cases are squamous cell carcinomas, which start in the flat cells of the skin.

That rarity has a direct consequence for treatment, and NCI states it plainly. There is no standard chemotherapy for vulvar cancer. Reports on its use in metastatic or recurrent disease are described as anecdotal.

What exists instead is borrowed evidence, and it is old. The summary names fluorouracil, cisplatin, mitomycin and bleomycin, in various combinations, usually given with radiation. These regimens were adapted from anal and cervical squamous cell cancers decades ago.

Since then, biomarker testing (lab tests on the tumor) has become more common. Some drugs are approved for solid tumors of any type that have grown after earlier treatment and show certain results, such as mismatch repair deficiency or a high tumor mutational burden. These may apply to some people here even though the summary does not discuss them. Ask your gynecologic oncologist and the pharmacy team what current options and open trials exist for your tumor, rather than treating that list as the whole field.

This is not a reason to lose confidence in your team. It is a reason to ask a specific question: what is the evidence behind the regimen being proposed, and which cancer was it originally studied in?

Prognosis (the likely outcome) in vulvar cancer turns on the inguinal lymph nodes, the nodes in the groin, and on whether nearby structures are involved.

NCI gives two figures, and both belong to operable disease rather than to cancer that has already spread. For people with operable disease and no lymph node involvement, overall survival is 90%. Where nodes are involved, the 5-year overall survival rate is approximately 50% to 60%. NCI adds that the size of the primary tumor matters less to prognosis than node status does. If your cancer is metastatic, neither number is your outlook. They are here because node status is the axis your team will keep coming back to.

The spread pattern is orderly. That is why the groin matters so much. StatPearls describes the drainage: first the superficial inguinal nodes, then the deep inguinal or femoral nodes, then the external iliac and finally the para-aortic nodes.

Ask which nodes are involved on your imaging or pathology, and whether the involvement is on one side or both.

One randomized trial asked what to do when groin nodes are positive. It enrolled people with clinical stage I to IV squamous cell vulvar cancer. In each, groin node spread was found during radical vulvectomy (removal of the vulva) and removal of the groin nodes on both sides. During the operation, they were assigned to one of two paths. One was removal of the pelvic nodes on the same side. The other was pelvic radiation at 45 to 50 Gy (the unit for radiation dose), given in 1.8 to 2.0 Gy fractions (daily doses).

Planned enrollment was 152. The trial stopped early, at 114, because radiation appeared to be helping. A trial that closes early on an interim signal is a weak base for a firm conclusion, and this one shows why. That advantage narrowed with longer follow-up. At a median follow-up of 74 months, the 6-year survival rate was 51% with pelvic radiation and 41% with pelvic node removal. The difference was not statistically significant.

That is a useful example of why an early trial result and a mature one can differ. It is fair to ask which version of a result you are being quoted.

Treatment and outcome depend on where the recurrence is and how far it extends. NCI describes several routes:

• Radical excision (wide surgical removal) of a localized recurrence, when technically feasible.
• Palliative radiation therapy for some people.
• Radiation, with or without chemotherapy. This has been linked to long disease-free periods in some small local recurrences.

One timing detail is worth knowing. A local recurrence appearing more than 2 years after first treatment behaves better than an early one. NCI reports that radiation combined with surgery may then give a 5-year survival rate above 50%. That is a figure for local recurrence. It is not a figure for metastatic disease.

So the question to ask is not only where the recurrence is, but how long it has been since primary treatment. That interval carries real prognostic weight.

The site of the original tumor affects what surgery can achieve. About 50% of vulvar carcinomas arise in the labia majora, the most common location. The labia minora account for 15% to 20%. The clitoris and Bartholin glands are involved less often. Lesions are multifocal, meaning in more than one spot, in about 5% of cases. These figures come from the National Cancer Institute’s “Vulvar Cancer Treatment (PDQ).”

Ask where your primary tumor was and whether it was single or multifocal. Multifocal disease changes both surgical planning and follow-up.

About the plan itself:

• Is the goal of this treatment cure, long control, or symptom relief?
• Which regimen is proposed, and was it studied in vulvar cancer or borrowed from another site?
• Is a clinical trial available, given how thin the evidence base is here?

About the surgery, if it is on the table:

• What structures would be removed, and what would sexual function and urination be like afterward?
• Would reconstruction be part of the operation or a later one?
• How many vulvar cancer operations does this surgeon perform each year?

About radiation:

• What dose and how many sessions?
• What skin and tissue effects should I expect, and when do they peak?

Vulvar cancer treatment touches sexual function and body image. It affects urination and even the ability to sit comfortably. These are medical topics, not side conversations. They belong in the visit.

Concrete things to raise:

• Whether a pelvic floor physical therapist is available to you.
• Whether vaginal dilators or topical estrogen are appropriate after radiation.
• Whether a specialist in sexual health after cancer is part of the center.

Leg swelling is worth its own question. Groin node surgery carries a real risk of long-term lymphedema. NCI says lymphedema is easier to control when treatment starts early, so ask about a lymphedema therapist as soon as you notice heaviness or swelling.

Palliative care manages pain, skin breakdown, and fatigue alongside cancer treatment. Ask for it early rather than treating it as a later step.

Three pages here go deeper. For how stage is assigned, see cancer staging. For the disease overview, see vulvar cancer. For what spread means in general, see metastatic cancer.

Vulvar cancer and its treatment sit on skin, in the groin, and near the urinary tract. That shapes what counts as urgent.

• Call 911 or go to an emergency department if bleeding from the vulva, the groin, or a wound will not stop with steady pressure, or if bleeding comes with dizziness or feeling faint.
• Ring your cancer team the moment it happens, day or night, if you have a temperature of 100.4°F (38°C) or higher and you are receiving chemotherapy, on its own or alongside radiation. Chemotherapy drives white cell counts down, and a fever in that window is an emergency. Ask to speak to someone now rather than leave a message; if nobody answers quickly, go to an emergency department and tell them you are on chemotherapy.
• Call your care team the same day if your temperature reaches 100.4°F (38°C) or higher and you are not on chemotherapy, for instance after surgery or during radiation alone.
• Call your care team the same day if redness on the vulva, groin, or a swollen leg is spreading, or you see red streaks running away from it, or the skin blisters. In a limb with lymphedema this points to cellulitis, a skin infection that spreads.
• Call your care team the same day if a surgical wound opens, drains pus, or smells bad, or if you cannot pass urine.
• Call your care team within a day or two if radiation skin reaction becomes raw, weeping, or too painful to sit on. Skin effects often build as a course goes on, and creams and dressings can be started.
• Call your care team within a day or two if leg swelling is new or clearly worse, or a new lump or sore appears. Lymphedema is easier to control when treatment starts early.

• National Cancer Institute, Vulvar Cancer Treatment PDQ, health professional version, updated May 14, 2025; accessed August 11, 2026
• NIH StatPearls (NCBI Bookshelf) — Vulvar Cancer
• MedlinePlus — Cellulitis, accessed August 11, 2026
• StatPearls (NCBI Bookshelf) — Neutropenic Fever, accessed August 11, 2026
• CDC — Watch Out for Fever, accessed September 27, 2026
• NCI — Lymphedema, accessed September 27, 2026
• MedlinePlus — Shock, accessed September 27, 2026
• Keytruda prescribing information (FDA), accessed September 27, 2026
• SEER Stat Facts: vulvar cancer, accessed September 27, 2026