Vulval cancer

What is vulval cancer?

The vulva is the name given to the visible sex organs that surround the opening of the vagina outside the body.

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

Vulval cancer is sometimes called vulvar cancer. It can affect any part of the vulva. The most common area for it to develop is the skin of the labia. It can also sometimes affect the tip of the clitoris or the Bartholin’s glands.

Types of vulval cancer

The most common type of vulval cancer is squamous cell carcinoma. 9 in 10 vulval cancers (90%) are this type. Squamous cell carcinoma 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, but these are not as common.

Verrucous carcinoma

This is a very rare, slow-growing type of squamous cell carcinoma that looks like a large wart.
Melanoma

This is a type of skin cancer that develops from cells that produce the pigment that gives skin its colour. Rarely it can develop in the skin of the vulva.
Basal cell carcinoma

This is a cancer that develops from cells called basal cells. These are found in the deepest layer of the skin of the vulva.
Sarcoma

Sarcomas develop from cells in tissue such as muscle, fat or blood vessels under the skin. They tend to grow more quickly than other types of vulval cancer.
Adenocarcinoma

This is a cancer that develops from cells that line the glands in the vulval skin.
Bartholin gland cancer

This is a cancer that develops in the Bartholin’s glands at the opening of the vagina.

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What is cancer?

Symptoms of vulval cancer

Symptoms of vulval cancer can include burning when passing urine and a sore or ulcerated area on the vulva. We have more information about all the symptoms of vulval cancer.

If you have any symptoms it is important to get them checked by your GP.

Causes of vulval cancer

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

We 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:

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Vulval cancer diagnosis

If you have symptoms, you usually begin by seeing your GP. If they think that your symptoms could be caused by cancer, they will 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 is a narrowing of the vagina due to lichen sclerosus (LS)
the vulva is too sore for a full examination.

Further tests

If your vulval examination and biopsy show 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

This uses x-rays 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 is 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

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

You will 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.
Exam under anaesthetic (EUA)

An examination under anaesthetic lets your doctor examine you fully and 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 does not 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:

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 with another operation or treated with radiotherapy.

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.

We have more detailed information about the staging and grading of vulval cancer.

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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. We have more detailed information about how vulval cancer is treated. You may have some treatments as part of a clinical trial.

Treatments may include:

Surgery

If surgery s possible, this is usually the main treatment. The aim is to completely remove the cancer. We have more information about what happens before and after surgery.
Radiotherapy

Radiotherapy uses high-energy rays, such as x-rays, to treat cancer cells. This treatment may be used before or after surgery. Sometimes it is the main treatment if you cannot 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 is the main treatment if you cannot 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

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

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After vulval cancer treatment

After your treatment has finished, you will 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 such as 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 is also here to support you. If you would like to talk, you can:

Call the Macmillan Support Line on 0808 808 00 00.
Chat to our specialists online.
Visit our vulval cancer forum to talk with people who have been affected by vulval cancer, share your experience, and ask an expert your questions.

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 is 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. Do not be afraid or embarrassed to ask for advice. Your cancer doctor or nurse can help or arrange for you to see a specialist.

Well-being and recovery

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

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

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About our information

References

Below is a sample of the sources used in our vulval cancer information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk

Morrison J, Baldwin P, Buckley L, et al. Gynaecological Cancer Society (BGCS) vulval cancer guidelines: recommendations for practice. 2020 [accessed November 2020].

Rogers LJ, and Cuello MA. Cancer of the vulva. Int J Gynaecol Obstet, 2018; 143, S2, 4-13. Available from https://doi.org/10.1002/ijgo.12609. [accessed November 2020].

Reviewers

This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Senior Medical Editor, Professor Nick Reed, Consultant Clinical Oncologist.

Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.

The language we use

We want everyone affected by cancer to feel our information is written for them.

We want our information to be as clear as possible. To do this, we try to:

use plain English
explain medical words
use short sentences
use illustrations to explain text
structure the information clearly
make sure important points are clear.

We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected.

You can read more about how we produce our information here.