Vulvar Cancer Survivorship Follow-Up Questions

Most survivorship plans watch for the original cancer coming back. Vulvar cancer adds a second reason to keep looking.

NCI explains it directly. Invasive and preinvasive growths of the vulva may be caused by human papillomavirus, and that effect may be spread widely across the vulvar skin. Because the whole surface can carry the change, people are monitored regularly for signs or symptoms of recurrence.

In practice, that means the examination is looking for two different things: the return of your cancer, and a new lesion somewhere else on the vulva. Ask your team to say which they are checking for at each visit.

There is no blood marker and no routine scan that substitutes for looking. Follow-up rests on inspection and examination of the vulva and the groin.

Useful things to establish:

• How often you will be seen, and by whom.
• Whether the groin is examined at every visit.
• Whether any imaging is scheduled, and what would trigger an unscheduled one.
• Whether biopsy of a suspicious area happens at the same visit or requires a separate appointment.

You will see your own skin far more often than your clinician will. Ask for a specific list of changes worth reporting, and ask for the reporting timeline in days rather than in vague terms.

Changes that generally warrant a call rather than waiting:

• A new lump, ulcer, or thickened patch anywhere on the vulva.
• A colored area that was not there before, or an existing one that changes.
• Persistent itching or burning in one spot.
• Bleeding that is not from the vagina.
• New swelling in one leg or groin.
• Pain in the groin that does not settle.

Using a mirror and good light once a month is a reasonable habit. Photographs on your own phone make change easier to notice, and they give the clinic something to compare against.

If you had groin lymph nodes removed, leg swelling is the complication most likely to affect daily life. The numbers explain why surgical practice has changed.

In a multicenter series, 403 people with vulvar squamous cell cancers smaller than 4 cm and clinically normal groin nodes underwent 623 sentinel lymph node procedures. When the sentinel node was clear, no further groin surgery was done. When it contained cancer, in 26% of procedures, full inguinofemoral lymphadenectomy followed.

The difference in lasting problems between those two groups was large:

• Chronic lymphedema: 1.9% after sentinel node dissection alone, versus 25.2% after full node removal.
• Wound breakdown: 11.7% versus 34%.
• Cellulitis, a skin infection: 4.5% versus 21.3%.
• Mean hospital stay: 8.4 days versus 13.7 days.

Groin recurrence after a negative sentinel node was uncommon. The 2-year rate was 3% for all patients, and 2% for those with a single-focus primary tumor.

Ask which operation you had, because it changes your risk profile for the rest of your life. If you had a full dissection, ask for referral to a lymphedema therapist now rather than after swelling starts. Compression, skin care, and prompt treatment of any leg infection are the mainstays.

This gets skipped in appointments more than almost anything else. It should not be, and raising it yourself is entirely appropriate.

Specific things to ask about:

• Vaginal narrowing or dryness after radiation, and whether dilators or topical treatment are appropriate for you.
• Pain with sitting, cycling, or intercourse, and whether pelvic floor physical therapy is available.
• Changes in sensation after surgery, including around the clitoris, and what is likely to recover.
• Whether the center has a clinician who focuses on sexual health after cancer.

Ask for a referral by name if one exists. General reassurance is not a plan.

Since the 1980s, vulvar cancer surgery has moved steadily toward doing less. Radical local excision with a margin of at least 1 cm has largely replaced radical vulvectomy for tumors confined to the vulva or perineum. Separate incisions have replaced removal of the groin nodes in one block with the tumor. One-sided node dissection has replaced two-sided dissection for tumors on one side. Femoral node dissection has been left out in many cases.

NCI adds an important caveat: these techniques have not been compared head to head in randomized trials, and the nonrandomized studies lack uniform definitions. So the evidence base behind the shift is limited, even though the reduction in harm is clear.

Knowing exactly which operation you had is worth writing down. It determines your lymphedema risk, your recurrence pattern, and what a future surgeon would need to know.

Vulvar intraepithelial neoplasia, or VIN, is the precancerous change that can precede invasive disease. NCI describes two distinct kinds, and they behave differently.

Usual-type VIN is HPV-associated. NCI notes it is most common in women younger than 50. Differentiated-type VIN is not HPV-associated, and it is most common in older women.

The cell type of the invasive cancer follows the same split. Between 75% and 100% of basaloid and warty carcinomas carry HPV infection, far more than the keratinizing subtypes.

Those HPV-linked subtypes share risk factors with cervical cancer, including a high number of sexual partners, first intercourse at an early age, and a history of abnormal Pap smears.

Worth raising at a follow-up visit:

• Which type of VIN or carcinoma was on my pathology report?
• Does that mean cervical screening should continue on the usual schedule?
• Is HPV vaccination relevant for me or for family members in the eligible age range?

Ask for a written summary that includes your stage and cell type, the exact operation performed, whether nodes were removed and how many were involved, the radiation dose and fields if you had radiation, the drugs and doses if you had chemotherapy, and your follow-up schedule.

That single page matters more than it sounds. Vulvar cancer is rare, and a future clinician may not have seen many cases.

For what to do if the cancer does return, see vulvar cancer recurrence questions. For the anxiety that comes with each check, see fear of recurrence. For general life after treatment, see survivorship.

• National Cancer Institute, Vulvar Cancer Treatment PDQ, health professional version, updated May 14, 2025; accessed August 6, 2026