• Reference Number: HEY-599/2018
• Departments: Gynaecology
• Last Updated: 31 May 2018

Introduction

This leaflet is intended to help provide answers to some of the questions you may have about your surgery for vulval cancer. However it is generalised information rather than personal, and you may find you are given some different information for your individual care. If you have any questions or comments about what you have been told, please discuss them with a member of your medical team.

If you have recently been diagnosed with cancer of the vulval area, or it has been suggested there is a possibility of cancer, it is perfectly normal to experience a wide range of emotions. For some women, this may be a frightening and unsettling time.

It will help you to cope with your feelings if you talk with someone who specialises in dealing with this condition, someone friendly who will listen and answer your questions. We have included a list of useful contact numbers in this leaflet.

What is vulval cancer?

Cancer of the vulva (also known as vulval cancer) can start on any part of the female external sex organs. But the commonest sites are the inner edges of the outer lips (labia majora) and the inner lips (labia minora). Less often, vulval cancer may involve the clitoris or two small glands each side of the vagina called the bartholins glands. It is also sometimes diagnosed in the perineum (the skin between the vulva and the anus). Vulval cancer does not form quickly. Usually there is a gradual change in the cells. First, normal cells become abnormal. Then these abnormal cells may go on to develop into cancer.

What is a vulvectomy?

Women with cancer of the vulva may need to have surgery to remove either some or all of the tissue in the affected area. How much is removed will depend upon the type of cancer cells, the size of the tumour, the area where it is located and whether it has spread beyond the original area. Your general health and other symptoms such as discomfort, pain, burning or itching in the area are also considered when planning your surgery.

Surgery is decided on an individual basis and can include:

• Wide local excision – removal of the tumour (cancer) and some normal tissue around it.
• Hemivulvectomy – one side of the vulva (inner and outer lips) may be removed if the tumour is on one side only.
• Partial vulvectomy – removal of part of the vulva. You may be able to have just the inner or outer labia removed, or the labia removed from one side only. This will depend on where the cancer is and how easy it is for your doctor to make sure they have taken what is required.
• Radical vulvectomy – removal of the cancer of the vulva (with a wide margin of healthy tissue).
• Clitoris – possible removal of part of the clitoris (the sensitive prominent erectile tissue positioned just above the urethra, or opening to the water passage).
• Perineal – on rare occasions, the removal of the perineal body (the tissue positioned towards the back passage or anus).
• Lymph nodes – removal of the lymph nodes (glands) in the groin.

The aim of the operation is to preserve as much of your normal anatomy as possible, whilst removing all the cancer. If the surgeon has to remove a large area of skin and tissue during the operation it is sometimes possible to have reconstructive surgery. This is refashioning of the area using skin and tissue grafted from other areas of your body.

The surgeon and nurses will discuss all the options available to you as well as the exact treatment recommended to treat your cancer.

Why do I need vulvectomy?

For the majority of women surgery is the best option to remove the cancer, however occasionally other options of treatment (chemotherapy/radiotherapy) may be used as an alternative.

Your wishes about treatment for your cancer will be respected at all times by your medical team. If you choose not to have treatment, your cancer will progress and your health will deteriorate. At this time you may wish for us to transfer your care to the Palliative Care Team who will discuss with you what will happen next and help you to manage your symptoms and support you.

Can there be any complications or risks?

All surgical procedures requiring a general anaesthetic carry with them a small chance of complications and a vulvectomy is no different. Every care is taken to minimise the risks.

The potential complications include:

• Infection – The risk of post operative infections is reduced by giving “preventative” antibiotics around the time of the surgery. Infections may occur in the vulval area, pelvis, bladder, chest or in the incision site. Infections are usually easily treated with antibiotics. Occasionally an abscess may form which may require surgical drainage under anaesthetic.
• Bleeding – This may occur during the operation or rarely afterwards and may require a blood transfusion. Occasionally if blood collects in the wound, it is necessary to drain the area requiring further surgery under an anaesthetic.
• Breakdown of wound – This can be a common complication and is due to the areas blood supply and the lack of good skin causing tightness of wound closure. It can also be related to infection. Breakdown of your wound and infection may result in a slower recovery but eventually with the use of antibiotics and good wound dressing techniques, you will start to feel better.
• Deep vein thrombosis and pulmonary embolism – In association with having a vulvectomy it is possible for clots of blood to form in the deep veins of the legs and pelvis. If this does occur a deep vein thrombosis will normally cause pain and swelling in the legs and can be treated relatively simply with drugs. However in rare cases it is possible for a clot to break away and be deposited in the lungs or heart and if this occurs it is a serious situation. The risk of developing a DVT is less than 1% as many precautions are taken to help prevent and minimise the risks. Moving around as soon as possible after your operation can help to prevent this. We will give you special surgical stockings (known as ‘TEDS’) to wear whilst you are in hospital and injections to thin the blood.

If you have any ongoing concerns or questions about the risk of complications, please do not hesitate to ask a member of the medical team.

Are there can long-term complications?

Yes, there may be long-term complications and these can include:

• Lymphoedema – The lymph nodes in your groin(s) may be removed. This is to prevent the spread of cancer or to remove cancer that has already spread to this area. Removing your lymph glands may disrupt the flow of the lymphatic fluid which flows around the body and normally drains through the lymph glands. If the flow is disrupted the fluid may collect in one or both legs and/or the genital area. The swelling that results is called lymphoedema and can be managed and treated. You will be given information and advice to reduce the risk of lymphoedema developing. Please tell your gynaecology clinical nurse specialist if you have any swelling or concerns. If necessary we can refer you to a specialist lymphoedema clinic.
• Lymphocyst – If your lymph nodes are removed you may develop a lump or cyst in your groin, which contains lymphatic fluid. This may be drained in clinic, but may later refill and need further drainage. Often it will be left to settle on its own.
• Sensation – Your outer or inner thighs may feel numb soon after your surgery if groin nodes were removed. This sensation usually improves over time but may leave some permanent numbness at the top of your legs.
• Altered sexual function – The surgery may change how you experience sexual interactions. There could be narrowing of the vagina (stenosis), changes in the anatomy of the vulva and clitoris. These changes could result a reduction in sensation or increased sensitivity, which may be uncomfortable/painful.  Please talk to your CNS about any issues you have they are there to help you.

How do I prepare for the vulvectomy?

Please read this information leaflet as well as the Gynaecology Oncology Enhanced Recovery patient information. Share the information it contains with your partner and family (if you wish) so that they can be of help and support. There may be information they need to know, especially if they are taking care of you following your surgery.

Make sure that all of your questions have been answered to your satisfaction (for example, is all of the labia going to be removed? Will the clitoris be removed?) and that you fully understand what is going to happen to you. You are more than welcome to visit the ward and meet the staff before you are admitted to hospital. Just ask the gynaecological clinical nurse specialist to arrange this for you. It may also be possible for you to talk to a patient who has already undergone a vulvectomy.

What happens afterwards?

For more information on what happens afterwards please read the Gynaecology Oncology Enhanced Recovery information for patients.

Leaving hospital and coping at home

When can I go home?

You will be in hospital between three and five days, occasionally longer, depending on the type of operation you have had and your individual recovery. This will be discussed with you before you have your operation and again whilst you are recovering.

When can I return to work?

This will depend upon the type of work you do, how well you are recovering and how you feel physically and emotionally. It also depends on whether you need any further treatment, such as radiotherapy, after your operation.

Most women need approximately two to three months away from work to recover fully before returning to work or their usual routine. However this will depend upon your recovery and you can discuss it further with your consultant, gynaecology clinical nurse specialist or doctor.

Remember – The return to normal life takes time, is a gradual process and involves a period of readjustment and will be individual to you.

What about exercise?

It is important to continue with gentle exercises for at least six weeks after your operation. Ideally you should carry on doing exercises for the rest of your life, particularly the pelvic floor exercises. Avoid all aerobic exercise, jogging and swimming until advised as this will allow the muscles cut during your operation to heal. The medical staff/Gynaecological Clinical Nurse Specialist will be happy to give advice on your individual needs.

When can I have sex?

You may not feel physically or emotionally ready to start having sex again for a while. It can take several months for the vulval area to heal and for sensation to improve. If your clitoris has been removed as part of the surgery, your sexual response may feel different.

It can also take time for energy levels and sexual desire to improve. During this time it may feel important for you and your partner to maintain intimacy despite refraining from sexual intercourse. It can also be a worrying time for your partner. They should be encouraged to be involved in discussions about the operation and how it is likely to affect your relationship afterwards. Their involvement can have a positive influence on your recovery.

If you do not have a partner at the moment, you may have concerns about starting a relationship after having this operation. Please do not hesitate to contact the Gynaecological Clinical Nurse Specialist if you have any queries or concerns about your sexuality, change in body image or how your surgery may affect your sexual relationship.

Follow up treatments and appointments

Will I need to visit the hospital again after my operation?

You will need to visit the hospital again and it is very important that you attend any further appointments arranged.

The histology (tissue analysis) results from your surgery will not be available before you are discharged home. However an early appointment for an outpatient clinic at your local hospital will be made to discuss the results and any further treatment options if necessary.

You will need to attend for regular follow-up appointments once your treatment is complete. These appointments will be arranged for every three to six months for the first two years. After this will depend on your individual needs. At these appointments you will be seen by a member of the gynae-oncology team.

Will I need further treatment?

If the cancer has not been fully removed or cancer is found in your lymph nodes, you will be referred to the clinical oncologists for consideration of radiotherapy treatment or the medical oncologist for chemotherapy.

Useful contacts and support agencies

Macmillan Cancer Support

Specialist advice and support through Macmillan nurses and doctors and financial grants for people with cancer and their families. For answers, support or just a chat call 0808 808 00 00 Monday – Friday, 9am – 8pm. www.macmillan.org.uk.

The Daisy Network

PO Box 71432

London SW6 9HJ

General enquiries:  info@daisynetwork.org.uk

They provide a support network for women who experienced a premature menopause.

https://www.daisynetwork.org.uk/

VACO – Vulva Awareness Campaign Organisation www.vaco.co.uk.

The Lymphoedema Support Network

St. Luke’s Crypt, Sydney Street, London, SW3 6NH.
020 7351 4480.
www.lymphoedema.org.

Information on Gynaecology Services at Hull University Teaching Hospitals NHS Trust   https://www.hey.nhs.uk/gynaecology/

Should you require further advice: Please contact the Gynaecology Clinical Nurse Specialists who will be happy to speak to you at anytime.

You may find it helpful to write down any questions you may have, so that you do not forget them when you attend your appointment.

Castle Hill Hospital

Gynaecology Clinical Nurse Specialist (01482) 624033
If they are not there, an answer phone is available.

Ward 11

Castle Hill Hospital (01482) 623011

Northern Lincolnshire and Goole Hospitals NHS Trust

Gynaecology Clinical Nurse Specialist (01724) 282282
Page through Switch Board or ask for extension 5904.

Scarborough Hospital

Gynaecology Clinical Nurse Specialist
Page through Switch Board – (01723) 368111

Office (01723) 385290.

Oncology/Haematology Department, Entrance 1, Castle Hill Hospital (01482) 461060

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

• you must be able to give your consent
• you must be given enough information to enable you to make a decision
• you must be acting under your own free will and not under the strong influence of another person

Information about you

We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.

If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.