Vulval cancer

The vulva is the name for the visible sex organs around the opening of the vagina, on the outside of the body.

Vulval cancer is rare. About 1,300 women are diagnosed with it each year in the UK. It can affect anyone who has a vulva, which includes women, trans men and people assigned female at birth.

You may also see it called vulvar cancer. It can develop in any part of the vulva, but the most common place is the skin of the labia. Sometimes it affects the tip of the clitoris or the Bartholin's glands.

Squamous cell carcinoma is the most common type of vulval cancer. About 9 in 10 vulval cancers (90%) are this type.

It can take many years to develop. It usually starts with pre-cancerous changes to the outer layer of the skin cells of the vulva.

There are other types of vulval cancer too, but they are not as common.

Verrucous carcinoma is a very rare type of squamous cell carcinoma, and it grows slowly. It looks like a large wart.

Melanoma is a type of skin cancer. It starts in the cells that make the pigment that gives your skin its colour. It's rare, but melanoma can develop in the skin of the vulva.

Basal cell carcinoma is a type of cancer that starts in cells called basal cells. You'll find these in the deepest layer of the skin of the vulva.

A sarcoma of the vulva starts in the cells of tissue such as muscle, fat or the blood vessels under the skin. It tends to grow more quickly than the other types of vulval cancer.

Adenocarcinoma of the vulva is a cancer that starts in the cells lining the glands in the vulval skin.

Bartholin gland cancer starts in the Bartholin's glands, which sit at the opening of the vagina.

Symptoms of vulval cancer can include:

• burning when passing urine
• a sore or ulcerated area on the vulva

Macmillan Cancer Support has more information about all the symptoms of vulval cancer.

If you have any symptoms, it's important to get them checked by your doctor.

If your vulval examination and biopsy show cancer, your doctor will arrange more tests to see whether the cancer has spread. This is called staging. The results help you and your doctor decide on the best treatment for you.

Some of these tests may be repeated during and after treatment, so your doctor can check how you're getting on.

Your doctor or specialist nurse will explain which of the following tests you may need.

You may need to have some blood taken. These tests check your general health and show how well your liver and kidneys are working.

A chest X-ray takes a picture of your chest. Doctors may arrange it to check your general health, or to look closely at your lungs and heart.

A CT scan uses X-rays to build a 3D picture of the inside of your body.

An MRI scan uses magnetism to build up a detailed picture of areas of your body.

A PET scan uses a low dose of radiation to check how active the cells are in different parts of your body. Sometimes it's done together with a CT scan, and then it's called a PET-CT scan.

It can give more detailed information about a cancer, or about abnormal areas that showed up on X-rays, CT scans or MRI scans.

Your doctor may suggest a cystoscopy if you have vulval cancer, to check whether the cancer has spread to the urethra (the tube you pass urine through) or to the bladder. Sometimes this test is done under a local anaesthetic. At other times it's done during an examination under a general anaesthetic.

Proctoscopy is an examination of the lower end of the large bowel, which means the anus and rectum.

You'll be asked to lie curled on your left side while the doctor gently passes a tube (a proctoscope) into your back passage. There is a tiny light and camera on the end of the proctoscope, so the doctor can see any abnormal areas. If needed, they can take a small sample of cells (a biopsy).

A proctoscopy can be uncomfortable. Tell the doctor or nurse if you find it painful.

You should be able to go home as soon as the proctoscopy is over.

An examination under anaesthetic lets your doctor examine you fully. They can also check how far the vulval cancer has spread, and you won't feel any discomfort.

Vulval cancer often spreads first to the lymph nodes in the groin, so your doctor will check these nodes for swelling.

Swollen lymph nodes don't always mean the cancer has spread. An infection, for example, can also make them swell.

Your doctor may suggest some tests to look more closely at the groin lymph nodes. These may include the following tests.

If any of your lymph nodes are swollen, your doctor may suggest an ultrasound and a fine needle aspiration to check them. If the test shows cancer cells in vulval cancer, the lymph nodes in the groin will either be removed in an operation or treated with radiotherapy.

A sentinel lymph node biopsy is a small operation to remove the lymph nodes most likely to be affected by cancer in vulval cancer.

Once the nodes are out, they go to a laboratory, where they're looked at under a microscope to check for cancer cells. If cancer cells are found, the rest of the lymph nodes in your groin will need to be removed. This can be done with another operation or with radiotherapy.

The stage of vulval cancer tells you how big the cancer is and whether it has spread beyond the area where it first started. Grading is about how the cancer cells look under the microscope compared with normal cells.

Knowing the stage and grade will support you and your doctor when you decide on the best treatment for you.

A team of specialists will meet to discuss the best possible treatment for you. This is called a multidisciplinary team (MDT).

Your cancer doctor or specialist nurse will explain the different treatments. Macmillan Cancer Support has more detailed information about how vulval cancer is treated. You may have some treatments as part of a clinical trial.

Treatments may include the following.

If surgery is possible, it is usually the main treatment for vulval cancer. The aim is to remove the cancer completely.

Macmillan Cancer Support has more information about what happens before and after surgery.

Radiotherapy uses high-energy rays, like X-rays, to treat cancer cells. For vulval cancer, you may have it before or after surgery. Sometimes it's the main treatment, if you can't have surgery.

Radiotherapy and chemotherapy can be given separately or together. When they're given together, this is called chemoradiation.

Radiotherapy may also be used to manage any symptoms the cancer causes and to improve quality of life. This is called palliative treatment.

Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. Doctors may give it before or after surgery. Sometimes it's the main treatment, if you can't have surgery.

Radiotherapy and chemotherapy can be given separately or together. When they're given together, this is called chemoradiation.

Chemotherapy may also be used to manage any symptoms the cancer causes and to improve quality of life. This is called palliative treatment.

Immunotherapy drugs help stimulate your immune system to recognise and destroy cancer cells. Sometimes this type of treatment is used for vulval cancer.

After your treatment has finished, you'll have regular check-ups with your cancer doctor or nurse. At first, appointments are usually every few months. Later they may only be once a year.

If you had a vulval skin condition like vulval lichen sclerosus (VLS) or vulval lichen planus (VLP) before vulval cancer, you should keep seeing your specialist for those conditions too.

You may still need ongoing treatment for the skin after your cancer treatment. Your doctor will advise you about this.

You may get anxious between appointments. This is natural, and support from family, friends or a support organisation may help.

Macmillan Cancer Support also has further information to support you. You can:

• phone the Macmillan Support Line on 0808 808 00 00
• chat to Macmillan specialists online
• use the Macmillan vulval cancer forum, where you can talk to others affected by vulval cancer, ask questions and share your experience

Lymphoedema is swelling caused by a build-up of lymph fluid in the body's tissues.

After treatment for vulval cancer, lymphoedema may develop if the nodes:

• stop working normally because of radiotherapy
• are removed during surgery

Fluid may collect and cause swelling in one or both legs, or in the pubic area. Not everyone gets it after treatment for cancer of the vulva, but it can start months or years later.

There are treatments that help manage the swelling. There are also things you can do to lower your risk of getting lymphoedema. Your doctor or nurse may arrange for you to see a specialist for advice.

Life after treatment for vulval cancer is often hard. Coping with changes to something as personal as your sex life can be especially difficult.

Your treatment may have changed how your body responds sexually, or how sex feels. It may also have changed how you feel about your body, about sex and about your relationships.

Many women have questions about sex after treatment, or find they need more help. These things aren't always easy to talk about, but support is available.

Please don't be afraid or embarrassed to ask for advice. Your cancer doctor or nurse can help, or they can arrange for you to see a specialist.

Even if you already live a healthy life, you may still want to make a few positive changes after treatment for vulval cancer.

Small changes, like eating well and keeping active, can improve your health and wellbeing and help your body recover.

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