Vulvar Cancer Recurrence: What to Ask

Vulvar cancer behaves differently from many solid tumors after treatment. NCI gives the reason in one line.

Invasive and preinvasive vulvar growths may be HPV-induced. The cancer-causing effect may be spread across the whole vulvar lining. So the whole surface carries risk. Not just the site that was removed.

That is why exams carry on for good. NCI says patients are watched regularly for signs or symptoms of return. It publishes no fixed interval for those visits. So the schedule is set locally, not by a national number.

That leads to a distinction worth making at every visit. A new lesion may be a return of the first cancer. It may also be a separate new one in the same field. Those are different events.

Some anatomy helps. About 50% of vulvar cancers arise in the labia majora. That is the most common site. The labia minora account for 15% to 20%. The clitoris and Bartholin glands are involved less often. Lesions are multifocal in about 5% of cases. More than 90% are squamous cell carcinomas.

VIN is the surface-level precursor. NCI names its usual return sites exactly. They are the perianal skin, the presacral area, and the clitoral hood. About 4% of people treated for VIN later develop invasive cancer.

Those two lists are worth knowing before an exam. They say where a clinician looks. They also say why an area that was never treated still gets checked.

Biopsy separates the possibilities. Appearance alone does not tell VIN from invasive cancer. The treatments differ sharply.

Groin nodes are checked too. Node status drives outcome more than tumor size does. NCI is explicit here. Outlook depends on the state of the inguinal lymph nodes. It also depends on spread to nearby structures. Overall survival is 90% for operable disease with clear nodes. With involved nodes, 5-year overall survival is about 50% to 60%. Tumour size matters less. Both figures describe operable disease in the cohorts NCI cites, without the ranges around them, so read them as showing how much nodes matter rather than as your own odds.

If sentinel node biopsy was used at the start, the risk figures are known. One series followed 403 women with tumors under 4 cm and clear groin nodes on exam. After a negative sentinel node, the 2-year groin return rate was 3%. For single-site tumors it was 2%.

NCI lists three options for recurrent disease.

Wide local excision, with or without radiation, for local return. Radical vulvectomy with pelvic exenteration, also for local return. And radiation given at the same time as chemotherapy, with or without surgery.

Treatment and outcome depend on site and extent. Wide removal of a localized return may be considered where it is technically possible. Palliative radiation is used for some people. Radiation, with or without chemotherapy, may give long disease-free periods for a small local return.

There is one more route, used when surgery looks impossible at first. Chemoradiation can sometimes convert a tumor to an operable one. NCI reviewed five nonrandomized studies of this approach. In the four that used fluorouracil with either cisplatin or mitomycin, the operability rate afterward ranged from 63% to 92%. In the one that used bleomycin, it was 20%. NCI notes that the evidence base is limited and the treatment-related toxicity is substantial.

One figure in the NCI summary is worth carrying into a conversation.

A local return 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 comes from a small, highly selected group: disease confined to the vulva, in people fit for both treatments. It is not a number to carry as a personal forecast.

Timing carries information on its own. A return years later is not the same as one months later. That holds even at the same site. So asking exactly how long it has been is not a small question.

Here the summary says something unusual. It deserves quoting rather than smoothing over.

NCI states there is no standard chemotherapy for vulvar cancer. It calls the reports of its use in spread or returned disease anecdotal.

What has been tried was borrowed, and it is old. The regimens come from anal and cervical squamous cell cancer, combining fluorouracil, cisplatin, mitomycin or bleomycin, and the experience behind them goes back decades. NCI's verdict on them is direct. There is no clear evidence of better survival or better symptom relief. It also notes that many people here are older and have other conditions. So tolerance is a major factor.

The summary names no immunotherapy option here either. That gap is the strongest argument on this page for a clinical trial. It is also an argument for asking early, rather than after several lines of borrowed treatment.

Since that summary was written, biomarker testing has become routine in squamous cancers, and results such as PD-L1, mismatch repair status or tumour mutational burden can open options and trials that the summary does not mention. Ask your gynaecologic oncologist what testing has been done on your tumour, and ask the pharmacy team what is currently approved and open.

One more thing follows from all of it. With no standard regimen, the choice rests more than usual on goals. What a person wants from treatment carries real weight when the evidence does not point one way.

Two harms come up again and again. Both belong in the decision.

Lymphedema is the first. In the sentinel node series, complications were much lower after sentinel node biopsy alone. Full inguinofemoral lymphadenectomy caused far more. In a randomized comparison of pelvic radiation against pelvic node removal, late chronic lymphedema affected 16% and 22%. More on managing it is in lymphedema.

The second is the cost of major surgery. Pelvic exenteration sits on the option list for a reason. So does the sexual and psychological effect of vulvar surgery. Writing about VIN, NCI names the physical and psychosexual harm of vulvar operations as the reason nonsurgical approaches were studied at all.

For background, see vulvar cancer, HPV and cancer, and fear of recurrence.

The field effect described above means a new lesion can appear in skin that was never treated. Most of what matters here is found by looking, so anything new is worth reporting rather than watching.

• Call 911 or go to an emergency department if bleeding from the vulva is heavy and will not stop with pressure.
• Call your care team the same day if redness in the groin or leg is spreading, or blisters or red streaks appear, or you have a temperature of 100.4°F (38°C) or higher. After groin node surgery, a leg with lymphedema is prone to skin infection that spreads fast.
• Ring your care team immediately, day or night, if that temperature of 100.4°F (38°C) or higher comes while you are on chemoradiation or any cytotoxic drug, and go to an emergency department if you cannot get hold of them quickly. Chemotherapy strips out the neutrophils, and a fever in that window is treated as an emergency, not as a call to be returned later in the day. Tell whoever sees you that you are having chemotherapy.
• Call your care team the same day if you cannot pass urine, or passing urine has become very painful.
• Call your care team within a day or two if you find a new lump, ulcer, sore or itchy patch anywhere on the vulva, the perianal skin or the clitoral hood. Those are the sites NCI names for a return.

• NCI PDQ — Vulvar Cancer Treatment (Health Professional Version)
• NCI PDQ — Vulvar Cancer Treatment (Patient Version)
• MedlinePlus — Cellulitis
• NCI — Infections and Neutropenia during Cancer Treatment
• CDC — Fever and Cancer Treatment