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.”