Vulval cancer is nothing to be ashamed of

In Dutch, vulval cancer is sometimes called schaamlipkanker (labial cancer), although that term is less accurate. The vulva is the external, visible part of the female genitalia. It includes the labia minora and labia majora, the clitoris, the vaginal opening, and the perineum (the area between the vagina and the anus). The term schaamlipkanker is not only inaccurate It is also rather unfortunate because schaam is the Dutch word for “shame” – as though it were something to be ashamed of. The opposite is true, stresses Dr Rawand Salihi, gynaecological oncologist at Ghent University Hospital and AZ Sint-Lucas Ghent. “As with all gynaecological cancers, the earlier it is detected, the better the prognosis. Unlike ovarian cancer, for example, vulval cancer has the advantage that we can detect it at an early stage.”

Not only older women

Each year, around 250 women in Belgium are diagnosed with vulval cancer.[1] The disease mainly affects older women: the median age at diagnosis is 70. However, younger women can also develop vulval cancer.
“Between 40% and 60% of vulval cancers are caused by a persistent infection with a high-risk type of HPV, particularly types 16, 18 and 33,” explains Dr Salihi. “This HPV-related form is more common in women under the age of 60. Vulval cancers that are not linked to HPV are usually associated with lichen sclerosus, a chronic skin condition. That form, in turn, occurs more often in older women.”[2]

Vulval cancer can be seen and felt

“What many people don’t realise is that vulval cancer also has precancerous lesions,” says Dr Salihi. “Just as we use the term CIN for precancerous changes in cervical cancer, vulval cancer has VIN – vulval intraepithelial neoplasia (see box). These lesions are also classified into three grades and can develop into cancer. In addition, women with precancerous lesions of the cervix or vagina automatically have an increased risk of developing vulval cancer, particularly the HPV-related form.”

Whereas cervical and vaginal cancer are usually detected early through cervical screening, vulval cancer is different because the lesions are on the outside and can therefore be seen and felt. In itself, that is an advantage. In most cases, women notice themselves that something is not right.

Typical symptoms include persistent itching, pain, a lump, a sore that does not heal, or a white or dark discoloured patch. Unexplained bleeding can also be a warning sign. “When we ask more detailed questions, it often turns out that they have actually been experiencing itching, pain, a sore or a lump for quite some time,” he says.

“In more advanced stages, the lymph nodes in the groin may become swollen. Fortunately, we rarely see such advanced tumours nowadays, except in older women who, for whatever reason, have not sought or received medical care for a long time.”

A biopsy provides clarity

“If you notice something that doesn’t go away after two weeks, have it checked by your GP first,” advises Dr Salihi. “They can often already assess whether it’s an ingrown hair or another harmless condition.”

If symptoms persist for weeks despite treatment, further investigation is warranted. Because GPs do not routinely take biopsies of the vulva, it is advisable to consult a gynaecologist or a gynaecological oncologist. “In cases of persistent symptoms, a biopsy must be taken. That’s the only way to establish a diagnosis with certainty,” he stresses. “Benign conditions such as redness, irritation or dryness can sometimes closely resemble a precancerous lesion. Even for an experienced gynaecologist, it’s not always easy to distinguish visually between, for example, lichen sclerosus, atrophy or a VIN lesion.” As a result, he regularly sees women who have been treated for months with various ointments and creams, without any improvement. Only when a biopsy is performed does it become clear that there is something more going on.

Looking for metastases

After the clinical examination and biopsy, additional investigations are carried out to map the extent of the disease.

“Once the diagnosis is confirmed, we assess how extensive the tumour is locally and check whether there are any metastases,” explains Dr Salihi. “For larger tumours, or if we suspect that the cancer has spread into surrounding structures, an MRI scan may be necessary. To detect metastases, we also examine the lymph nodes in the groin using ultrasound and, if needed, perform a puncture of any suspicious nodes. Depending on the size and extent of the tumour, a CT scan or PET-CT may also be carried out.”

Good prospects, provided that…

The prognosis depends first and foremost on the stage at which the tumour is detected. “As with all gynaecological cancers, the earlier the diagnosis, the better the outlook,” says Dr Salihi.

If vulval cancer is diagnosed at an early stage and the lymph nodes are not affected, you have a very good chance of recovery, almost 90% (five-year survival). Once the disease has spread to the lymph nodes, the outlook becomes less favourable and the five-year survival rate decreases.

In addition, your age, general health and the type of tumour also play a role. “HPV-related vulval cancers generally have a more favourable prognosis than HPV-negative tumours,” says Dr Salihi. “However, recurrence remains possible, especially in HPV-related vulval cancers, because the underlying HPV infection doesn’t disappear with treatment.”

The place where you are treated also makes a difference. Studies show that treatment in a specialised centre with a multidisciplinary team demonstrably improves outcomes for patients.[3]

Time, explanation and space for questions

Once the diagnosis has been made, then what? A cancer diagnosis turns your world upside down. Gynaecological cancers also have an impact on your sex life and your self-image. How does Dr Salihi approach the conversation with his patients?

“The most important thing is that you can have such a conversation in a calm environment, without interruptions. I switch off my phone and let my colleagues know they are not to disturb me. And I try to take enough time. That’s not always easy, because we’re also assessed on how many patients we see and how much time we spend per patient. But it’s incredibly important that women are given the time to let the information sink in. After such a conversation, most people will have forgotten about 50% of what I’ve told them – there’s research showing that. That’s why I always encourage my patients to bring someone along: a partner, family member or close friend, it doesn’t matter. Hopefully that other person will also remember part of the information.”

“I also try to avoid jargon as much as possible. It’s much easier, and quicker, for us doctors to talk about a unifocal squamous cell vulval carcinoma of 2 centimetres with an invasion depth of 2.5 millimetres and a negative sentinel node, but patients don’t retain any of that. So, you have to explain things in simple terms (see box). I always say: interrupt me if something is not clear and ask questions. Nowadays we also use leaflets with illustrations that we’ve developed together with patient organisations. With these, we can show what’s going on and what treatment is being proposed, and patients can look everything over at home in their own time.”

And it doesn’t stop at just one conversation. Dr Salihi always tries to schedule a second consultation before treatment starts. “That’s not always easy either, because patients usually prefer to have surgery the next day. But my experience is that only when they get home do they really start thinking about it, and then dozens of questions come up. I advise them to write those questions down so we can go through them in our follow-up consultation.”

“It has happened more than once that an oncology nurse called me afterwards to say: the patient had understood everything, but she still had questions about sexuality and didn’t dare to ask them.” According to Dr Salihi, this shows how important it is that women can rely on a multidisciplinary team of healthcare professionals. “Not everyone dares to ask everything straight away to the doctor. Understandably. They think: this doctor needs to treat my cancer, the rest can wait. In a conversation with another member of the team, those other questions often do come up. It’s also one of the reasons why I strongly believe in centralising gynaecological oncology care.”

A call to doctors and women alike

Cervical and vaginal cancer could, if managed properly, be almost eliminated. “Vulval cancer is a bit different,” nuances Dr Salihi, “because even with vaccination and screening, we’ll continue to see non-HPV-related vulval cancers.”

Still, he believes the number of vulval cancers could also be significantly reduced by continuing to invest in cervical screening and by keeping the threshold low for referral to a gynaecologist in cases of chronic vulval complaints or unusual bleeding. In addition, doctors should remain alert to the increased risk of vulval cancer in women with a long-standing HPV infection, a history of cervical or vaginal cancer or their precursors, a weakened immune system, or skin conditions such as lichen sclerosus.

“To my fellow specialists I’d say: if you are taking a smear anyway, have a quick look at the vulva as well – it literally takes less than a minute!” he says. And for women, I can’t emphasise enough: itching, pain, a sore, an unusual spot, abnormal bleeding? Don’t let it linger. There’s nothing to be ashamed of!”

[1] Belgian Cancer Registry, Brussel, 2026
[2] For the sake of completeness: according to the current international classification, specialists distinguish three types of vulval cancer: an HPV-related type, a non-HPV-related type that is often associated with lichen sclerosus, and a rarer third type that does not clearly fit into either of the other two categories.
[3] e.g. Oonk, Maaike HM, et al. “European Society of Gynaecological Oncology guidelines for the management of patients with vulvar cancer-update 2023.” International Journal of Gynecological Cancer 33.7 (2023): 1023-1043 and Zapardiel, Ignacio, et al. “Prognostic factors in patients with vulvar cancer: the VULCAN study.” International Journal of Gynecological Cancer 30.9 (2020): 1285-1291.