Vulval cancer

What causes vulval cancer?

The exact cause of vulval cancer is unknown. However, some risk factors can increase the chances of developing it.

Macmillan Cancer Support have more information about the causes of vulval cancer. This includes information about some skin conditions of the vulva that can increase your risk of developing vulval cancer.

If you have symptoms of vulval cancer, you'll usually begin by seeing your doctor. If they think that your symptoms could be caused by cancer, they'll refer you to a specialist clinic or doctor. This is often a doctor who specialises in female reproductive system cancers (a gynaecological cancer specialist).

The main tests for vulval cancer are an examination of the vulva and a small sample (biopsy) of any abnormal looking areas. You can usually have these tests during an outpatient appointment. You may have them under a general anaesthetic if:

• there's a narrowing of the vagina due to lichen sclerosus (LS)
• the vulva is too sore for a full examination

Macmillan Cancer Support have advice on cancer tests and waiting for results.

Further tests

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

Some tests may be repeated during and after treatment to check your progress.

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

Blood tests

You may have blood samples taken to check your general health and how well your liver and kidneys are working.

Chest X-ray

An X-ray is used to take a picture of your chest. It may be done to check your general health or to look at your lungs and heart.

CT scan

A CT scan makes a 3D picture of the inside of the body using X-rays.

MRI scan

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

PET or PET-CT scan

A PET scan uses low-dose radiation to check the activity of cells in different parts of the body. It's sometimes given together with a CT scan. This is called a PET-CT scan.

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

Cystoscopy

You may have a cystoscopy to check if the cancer has spread to the tube that you pass urine through (urethra) or to the bladder. You may have this test under a local anaesthetic or sometimes during an examination under a general anaesthetic.

Proctoscopy

Proctoscopy is an examination of the lower end of the large bowel (anus and rectum).

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

Examination under anaesthetic (EUA)

An examination under anaesthetic lets your doctor examine you fully. They can also check the extent of the cancer without causing you discomfort.

Lymph node tests

A common place for vulval cancer to spread to is the lymph nodes in the groin. Your doctor will check these nodes for swelling.

Having swollen lymph nodes doesn't always mean that the cancer has spread. For example, an infection can also cause lymph nodes to swell.

Your doctor may suggest you have tests to check the groin lymph nodes. These may include the following tests.

Ultrasound and a fine needle aspiration

Your doctor may suggest you have an ultrasound and a fine needle aspiration to check any of your lymph nodes that are swollen. If this test shows cancer cells, the groin lymph nodes will be removed during an operation or treated with radiotherapy.

Sentinel lymph node biopsy

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

After surgery, the nodes are sent to a laboratory and examined under a microscope to see if they hold cancer cells. If they show cancer cells, the remaining groin lymph nodes will need to be removed. This will be done through another operation or radiotherapy treatment.

Staging and grading of vulval cancer

The stage of a cancer explains its size and whether it has spread beyond the area it first started. Grading is how the cancer cells look under the microscope compared with normal cells.

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

Macmillan Cancer Support have more information about the staging and grading of vulval cancer.

Treatment for vulval cancer

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 have 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.

Surgery

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

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

Radiotherapy

Radiotherapy uses high-energy rays, like X-rays, to treat cancer cells. This treatment may be used 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 given together this is called chemoradiation.

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

Chemotherapy

Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. This treatment may be used 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 given together this is called chemoradiation.

Chemotherapy may also be used to manage any symptoms caused by the cancer and 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 to treat vulval cancer.

After vulval cancer treatment

After your treatment has finished, you’ll have regular check-ups with your cancer doctor or nurse. Your appointments will usually be every few months at first. 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.

After cancer treatment, you may still need ongoing treatment for the skin. Your doctor will advise you about this.

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

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 – you can talk to others affected by vulval cancer, ask questions and share your experience

Lymphoedema

Lymphoedema is swelling that develops because of a build-up of lymph fluid in the body’s tissues.

After vulval cancer treatment, 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 the pubic area.

Not everyone gets lymphoedema after treatment for cancer of the vulva. But it can start months or years later.

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

Sex life

Life after cancer treatment is often challenging. It can be especially difficult to cope with changes to something as personal as your sex life.

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

It’s common to have questions about sex or need more help after treatment. These things are not always easy to talk about. There is support available.

Don’t be afraid or embarrassed to ask for advice. Your cancer doctor or nurse can help or arrange for you to see a specialist.

Wellbeing and recovery

Even if you already have a healthy lifestyle, you may choose to make some positive lifestyle changes after treatment.

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

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