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Understanding Cancer of the

An information sheet for women with cancer, their families and friends.

This information has been prepared to help you If something goes wrong with the genes that understand more about cancer of the vulva control a cell, that cell may start behaving (). It is an introduction to the strangely. Instead of growing normally, it may diagnosis, treatment and effects of this cancer. grow and divide in an uncontrolled way, forming a mass of cells. The mass of cells looks We cannot advise you about the best treatment and feels like a lump, and is called a tumour. for you. You need to discuss this with your doctors. However, we hope this information A tumour can be benign (not cancer) or it can will answer some of your questions and help be malignant (cancer). The difference is that you think about the questions you want to ask benign tumours do not spread to other parts of your doctors. the body, while malignant tumours can. For more detailed information on cancer of the A malignant tumour is made up of cancer cells. vulva, you may wish to contact the Cancer When it first develops, the tumour stays in one Council Helpline on 13 11 20 or refer to the place. This is called the primary tumour. list of recommended websites under the heading Information on the Internet on the If the cancer cells that make up the primary back page of this booklet. tumour are not treated, they may start to spread to other areas of the body and form new tumours. These new tumours are called secondary cancers or metastases. What is cancer? Cancer is a disease that can occur in any type of cell in the body. Our bodies are continually making new cells: to replace dead cells, to heal How cancer spreads damaged cells after an injury, and to enable us to grow in size. All cells are controlled by genes. Primary cancer

Local invasion

The beginnings of cancer Angiogenesis – tumours grow their own blood vessels Normal cells Abnormal cells Abnormal cells Malignant or multiply invasive cancer Lymph vessel

Boundary

Boundary Metastasis – cells move away from Lymph the primary tumour vessel and invade other parts of the body Blood via blood vessels vessel © The Cancer Council Victoria © The Cancer Council Victoria and lymph vessels

Some benign tumours are precancerous and may progress to cancer if left untreated. Other benign tumours do not develop into cancer. Blood vessel The vulva How common is it? The vulva is a general term describing the sex Cancer of the vulva is rare. Around 70 women organs of a woman. The vulva includes: are diagnosed with vulvar cancer in NSW each • Mons (Mount of Venus): the soft fatty year. It usually affects postmenopausal women tissue covered with pubic , which is between the ages of 55 and 75, but can occur in above the . younger or older women. It is becoming more common in younger women. • Labia: the two outer larger lips (the ), which surround two inner smaller and thinner lips (the ). • : a highly sensitive organ found at the What are the causes? top where the labia minora join. When stimulated, the clitoris fills with blood and Precancerous conditions enlarges in size. Stimulation of the clitoris can result in sexual excitement and orgasm Although the cause of cancer of the vulva or climax. remains unknown, it has been linked to certain early changes in the cells of the vulva, usually called precancerous conditions. Clitoris One such condition is called VIN (vulvar Outer lips intraepithelial neoplasia). This means abnormal (labia vulvar cells and is not cancer. VIN occurs in the majora) skin of the vulva and can develop into vulvar cancer. Almost one-third of vulvar cancers develop in women who have VIN. Inner lips The human papilloma virus (HPV), or wart (labia virus, appears to be associated with VIN. minora) HPV is passed from one person to another during sexual activity. Women who have had multiple sexual partners may be exposed to a Anus variety of HPV and therefore are at greater risk of VIN. However, women who have had only one sexual partner can also develop VIN. Just below the clitoris is the opening through which women pass urine (the urethra) and In younger women, a precancerous lesion (an below this is the vagina, a tubular passage area of tissue with abnormal cells) is more through which menstrual blood flows, sexual likely to be linked with HPV and this increases intercourse occurs, and a baby is born. the risk of vulvar cancer. Older women who get vulvar cancer often don’t have a link with HPV. The area of the skin between the vulva and anus is called the perineum. All these structures For more information Not all women who are visible from outside the body. on VIN and HPV, call have VIN will develop the Cancer Council vulvar cancer. Cancer of the vulva can start on any part of the Helpline on 13 11 20. external female sex organs. The most common areas for it to develop are the inner edges of the outer lips (labia majora) and the inner lips (labia minora). Less often, vulvar cancer may also involve the clitoris or the Bartholin’s glands (small glands, one on each side of the vagina). It can also affect the perineum (the skin between the vulva and the anus).

 The Cancer Council New South Wales Skin conditions What are the symptoms? Women who have certain non-cancerous skin The most common symptoms of cancer of the conditions for a long time have an increased vulva are: risk of developing vulvar cancer. These conditions, called vulvar lichen sclerosus and • itching, burning and soreness of the vulva vulvar lichen planus, affect the skin in the • a lump, swelling or wart-like growth vulvar area. The skin can become inflamed and • thickened, raised, red, white or dark patches itchy, and split and crack, causing pain. The on the skin of the vulva vulva may become distorted and change in • bleeding or a blood-stained vaginal discharge shape and size. not related to menstrual bleeding Almost two-thirds of vulvar cancers occur in • burning pain when passing urine women who have lichen sclerosus. • pain in the area of the vulva Lichen sclerosus is far more common than • a sore or ulcerated area on the vulva vulvar cancer, and only a small percentage of • a mole on the vulva that changes shape or women with lichen sclerosus (less than 15%) colour. go on to develop vulvar cancer. Cancer of the vulva usually takes many years to develop but, as with other cancers, it is Smoking easier to treat and cure at an early stage. Any of the above symptoms can be a sign of many Cigarette smoking increases the risk of conditions other than cancer, but always get developing the precancerous condition VIN, checked by your doctor to be sure. as well as the risk of developing vulvar cancer. This may be because smoking can make the immune system work less effectively. Cancer of the vulva, like other cancers, is not Types of cancer of the vulva infectious and cannot be passed on to other Squamous cell carcinoma: Most vulvar cancers people. An inherited faulty gene does not cause (90%) develop from squamous cells, the skin it and so other members of your family are not cells of the vulva. These cancers usually grow likely to be at risk of developing this cancer. very slowly over a few years. Vulvar melanoma: Vulvar melanomas develop from melanin, the cells that produce pigment Why do we have to be ashamed about and give skin its colour. Only about 2-4% of having vulvar cancer? No one is vulvar cancers are melanoma. embarrassed when they have breast Adenocarcinoma: These are very rare. They cancer. When you connect with develop from cells that line glands in the another woman who has had vulvar vulvar skin. Paget’s disease of the vulva is a cancer, you soon find out that there is pre-malignant condition where glandular cells spread outwards and across the vulvar skin. no need for shame or embarrassment. Verrucous carcinoma: This rare, very slow- growing type of cancer looks like a large wart. Sarcomas: These are extremely rare. Sarcomas develop from cells in tissue, such as muscle or fat under the skin, and tend to grow more quickly than other types of cancer.

Understanding Cancer of the Vulva  Diagnosis Biopsy Usually you begin by seeing your GP, who will A biopsy is the best way to diagnose cancer of examine you. If there is a chance you have the vulva. This means removing a sample of vulvar cancer, you should be referred to a tissue from the affected area of the skin. First, specialist called a gynaecological oncologist. an injection of local anaesthetic is given where A gynaecological oncologist is a doctor who the abnormal cells occur on the vulva. The specialises in diagnosing and treating cancer of doctor then takes a small amount of these cells women’s reproductive organs (including the (a biopsy) so that a pathologist can examine vulva). This specialist is very experienced with them under a microscope, to confirm whether gynaecological cancers and is the best type of cells are cancerous, and if so, show which type doctor for you to be seen and treated by. of vulvar cancer it is. Your doctor may also arrange for you to have a blood test and chest x-ray to check your Further tests general health. At the clinic or hospital the Even after a diagnosis is made, further tests are gynaecological oncologist will take your medical often needed to determine the size and position history and do a full medical examination. of the cancer, and whether it has spread. This process is called staging. The results will help you and your doctor decide on the best Vulvoscopy treatment for you. The following tests are most This medical procedure will include an often used with cancer of the vulva. examination of your vulva. A colposcope may be used to identify any abnormal areas. The Blood test colposcope is like a small microscope with a bright light that can magnify areas so that the A sample of your blood is taken to check the cells there can be seen more clearly. The number of cells in your blood and to see how colposcope remains outside the body. A biopsy well your kidneys and liver are working. will also be taken (see the heading Biopsy). Chest x-ray Internal examination This is taken to check that your and heart are healthy. You will also have an internal examination to check your vagina and for any abnormality. A cervical smear (Pap test) may be done if you Pap tests haven’t had one recently. Some women with lichen planus or lichen sclerosus can have Pap tests do not detect cancer of the vulva. narrowing of the vagina so they may need to However, if you haven’t had a test within have the smear under a general anaesthetic. the last two years, your doctor may also recommend one to determine the health of The doctor may also examine your rectum to the cells in the cervix. check for any abnormal lumps.

 The Cancer Council New South Wales Stages of vulvar cancer The stage of a cancer is a term used to describe its size and whether it has spread beyond its original site. Knowing the type and stage of the cancer helps the doctors to decide on the most appropriate treatment. Carcinoma in-situ: This is very early cancer. The cancer is found in the vulva only, and is only in the surface of the skin. Stage 1: Cancer is found only in the vulva and/or perineum, which is the space between the opening of the rectum (the anus) and the CT scan vagina. The affected area is 2cm or less in size. A CT (computerised tomography) scan is a series of x-rays that builds up a three- Stage 2: Cancer is found in the vulva and/or dimensional picture of the inside of the body. perineum. The affected area is larger than 2cm. The scan is painless and takes between 10 and Stage 3: Cancer is found in the vulva and/or 30 minutes. Before the scan you will be asked perineum and has spread to nearby tissues such to drink a special liquid that shows up on as the lower part of the urethra (the tube x-ray. You may also need to have an injection through which urine passes), the vagina, the of a contrast medium into a vein in your arm. anus (the opening of the rectum) and/or nearby lymph nodes. MRI Stage 4: Cancer has spread beyond the urethra, MRI (magnetic resonance imaging) is similar to vagina and anus into the lining of the bladder a CT scan, but uses a magnetic field instead of or the bowel, or it may have spread to the x-rays to build up cross-sectional pictures of lymph nodes in the or to other parts of your body. Some people are given an injection the body. of dye into a vein in the arm to improve the image. During the test you will be asked to lie very still Prognosis on a couch inside a long chamber for up to an hour. An MRI is painless but some people find Prognosis means the expected outcome of a that lying in the cylinder is noisy and disease. The earlier the vulvar cancer is claustrophobic. If you feel uncomfortable, you diagnosed, the better the chances of successful can communicate with the technologist who is treatment and cure. Many factors affect carrying out the scan through a microphone prognosis, including the stage of the cancer and and speaker inside the scanner. You will also be your general health. Much of this information able to see the technologist through a window. will not be known until after surgery and will be discussed with you when the results of your Examination under anaesthetic surgery are available. This is an examination of the vulva carried out For more information on your prognosis, talk under a general anaesthetic. It allows the to your doctor. Only someone who knows your doctor to examine your vulvar area thoroughly medical history can tell you what to expect and without causing any discomfort, and to check advise you about the treatment options that are the extent of the cancer. best for you.

Understanding Cancer of the Vulva  Treatment If it is necessary to remove a large area of skin, you may need a skin graft or skin flaps. To do Treatment for cancer of the vulva may include this, the surgeon may take a thin piece of skin surgery, radiotherapy and/or chemotherapy. from another part of the body (usually the thigh or ) and stitch it on to the You may have one of these treatments or a operation site. It may be possible to move combination. The treatment you need depends (rotate) flaps of skin in the vulvar area to cover on the stage of the cancer when it is diagnosed. the wound. The graft or flaps will be done straight after the cancer is removed, as part of Surgery the same operation. Surgery is the main treatment for cancer of the vulva. It may be used either alone or in Lymph nodes combination with radiotherapy and The lymph nodes (also called lymph glands) in chemotherapy. Your doctor will talk to you the are usually the first place to which about the most appropriate type of surgery. vulvar cancer spreads. Lymph nodes are part of the lymphatic system, and are found mainly in There are several different operations for the groin, neck and armpits. cancer of the vulva. Which operation you have usually depends on the stage of the cancer. If the vulvar cancer is small, some surgeons • Wide local excision takes out the cancer and perform a procedure called a sentinel lymph a border (margin) of healthy tissue, ideally at node biopsy. This involves giving an least 1cm, all around the cancer. anaesthetic, then injecting a radioactive dye • Radical local excision takes out the cancer into the cancer. The aim of a sentinel node and a larger area of normal tissue all around biopsy is to identify the first node to which the the cancer. The groin lymph nodes may also be cancer might spread. If the cancer has spread to removed (known as lymph node dissection). a lymph node, the node will take up the dye, allowing the surgeon to locate and remove it. • Partial vulvectomy removes part of the vulva. This surgical technique is still being refined. • Radical vulvectomy removes the entire vulva, including the clitoris, and usually the If the cancer is deeper than 1mm, you will surrounding lymph nodes. usually be advised to have the lymph nodes • Pelvic exenteration is done if the cancer has from one or both sides of your groin removed. spread beyond the vulva. The surgeon This is done to check whether any cancer cells removes the affected organs (such as the have spread from the vulva. If the cancer is at lower bowel, or the bladder and the cervix, the very earliest stage, surgery to your lymph and vagina). nodes will probably not be needed. The surgeon will aim to remove the cancer while preserving as much normal tissue as Removing the lymph nodes can make your legs swell possible. However, it is important that a (lymphoedema). For ways to manage lymphoedema margin of healthy tissue around the cancer is see page 7. removed, to reduce the risk of the cancer coming back (recurring) in this area. Usually only a small amount of unaffected skin is removed with the cancer and it is often possible to stitch the remaining skin neatly together.

 The Cancer Council New South Wales Recovery after surgery Lymphoedema How quickly you recover after your operation If the lymph nodes in your groin have been will depend on the type of surgery you have had. removed, or if you have had radiotherapy If only a small amount of skin is removed, the to this part of your body, there is a risk of wound will probably heal quickly. If your lymph swelling of one or both of your legs. nodes are removed or your surgery is more extensive, recovery will take longer. The lymph nodes normally help to remove lymph fluid from your legs. Removing the nodes You will be encouraged to start gently moving can block the flow of lymph so that it collects in around as soon as possible after your the tissues under your skin. This can make your operation. While you are in hospital, the nurse legs swell and is called lymphoedema. The or a physiotherapist will help you do regular condition can develop a few months or even gentle leg exercises to prevent blood clots years after treatment. forming, as well as deep breathing exercises to prevent chest infection. Many hospitals have a nurse or physiotherapist who specialises in treating lymphoedema. When you go home from hospital, you will need to take things easy for a while. If you have had major surgery, it is very important not to lift any heavy objects for at least six to eight Tips for treating lymphoedema weeks. This will help the wound to heal. It is also advisable to wait about eight weeks before ✓ Gently massage the swollen leg towards going back to work, but you may need longer if your heart to move the fluid out to other you are healing slowly. lymph channels. ✓ Wear special bandages, stockings or a You can usually start driving after six weeks. compression garment to help remove However, your car insurance company may fluid. specify a longer time before you can drive again, ✓ Avoid infection by caring for your skin and so it is a good idea to contact them to check. nails, and keeping the skin moist. Surgery can impact on your emotions and sex ✓ Exercise the leg to help move fluid out of life in a huge way. For information about the area and into other lymph channels. coping with these important issues, see page 11. ✓ Avoid cuts, burns, insect bites, sunburn and injections in your legs.

For more information, contact the Lymphoedema Support Group NSW on (02) 9402 5625 or visit the website www.lymphoedemasupport.com. The Lymphoedema Association of Australia may also be useful – www.lymphoedema.org.au.

Understanding Cancer of the Vulva  Radiotherapy External radiotherapy Whether you have radiotherapy or not will External radiotherapy is normally given as a depend on the stage of your cancer, its size, series of short daily treatments in the hospital whether it has spread to the lymph nodes and, radiotherapy department. High-energy x-rays are if so, how many nodes are affected. directed from a machine at the area of the cancer. You may be given radiotherapy externally, The number of radiotherapy treatments will where a machine directs radiation at the cancer, depend on the type and size of the cancer, but the or internally, where radioactive material is put whole course of treatment for vulvar cancer will in thin tubes into your body on or near the usually last a few weeks. Each treatment takes cancer. Whether you are given internal or about 10-15 minutes. External radiotherapy will external radiotherapy will depend on your not make you radioactive and it is safe for you to individual circumstances, the size of the cancer be with other people, including children, after and its response to initial radiation. your treatment. When you are given radiotherapy will depend on a number of factors, including: Side effects • Radiotherapy before surgery: Sometimes Radiotherapy to the vulva and groin causes radiotherapy is given before surgery to shrink general side effects such as diarrhoea and the cancer and make it easier to remove. This tiredness. It can also cause other side effects. is called neo-adjuvant radiotherapy. These side effects can be mild or troublesome, • Radiotherapy after surgery: Radiotherapy depending on the strength of the radiotherapy may be given to the vulva and the lymph dose and the length of your treatment. Your nodes after surgery to make sure that any doctor will let you know what to expect. remaining cancer cells are destroyed, and to Side effects of radiotherapy may include: reduce the risk of the cancer coming back. Radiotherapy given after surgery is called • Skin reaction: Because the skin in the area of adjuvant treatment. the vulva and groin is very sensitive, radiotherapy will cause soreness. Use • Radiotherapy used instead of surgery: If the lukewarm water to wash the treatment area cancer is known to have spread to the lymph and pat the area dry gently with a towel. nodes, radiotherapy may be used instead of Talcum powder or perfume can cause surgery to treat this area. irritation, so avoid using these on the treated • To control symptoms: In advanced vulvar area. Your radiation therapist or nurse cancer (where the cancer has come back or should advise you on skin care, as this will spread), radiotherapy may be used to shrink vary during treatment and after radiotherapy a tumour, reduce symptoms and improve has finished. quality of life. This is called palliative radiotherapy.

 The Cancer Council New South Wales • Cystitis: Radiotherapy to the groin may cause Internal radiotherapy inflammation of the lining of the bladder, which can make you feel that you want to Internal radiotherapy, also called brachytherapy, pass urine frequently. You may also feel a involves putting a radioactive material directly burning sensation when you pass urine. Your into the cancer. This is done in less than 2% of doctor can prescribe medication that can women with vulvar cancer. This type of therapy make passing urine more comfortable. It is given by inserting radioactive needles or wires helps to drink plenty of water and other into the cancer while you are under a general fluids to make your urine less concentrated. anaesthetic. Over a few days, the needles or wires give a high dose of radiotherapy directly • Diarrhoea: Radiotherapy may also irritate to the tumour from the inside. the bowel and cause some diarrhoea. If this is a problem let your doctor know, as drugs You will need to be cared for in a single room can be prescribed to control it. It helps to in hospital for a few days until the doctor has drink plenty of water to replace the fluid lost removed the radioactive needles or wires from through diarrhoea. your body. • Hair loss: Radiotherapy can cause hair loss Although it will be safe for your family and in the area being treated, and this may be close friends to visit you for short periods, permanent. children and pregnant women will not be allowed to visit, to avoid any chance of them • Narrowing of the vagina: Radiotherapy to the being exposed to even tiny amounts of radiation. pelvic area can affect the vagina, which will become tender during the course of The safety measures and visiting restrictions radiotherapy and for a few weeks after it ends. might make you feel very isolated, frightened and depressed at a time when you might want In the long term this irritation can leave people around you. The isolation only lasts scarring that makes the vagina narrower and while the radioactive wires are in place (usually less flexible. This may make sexual a few days). intercourse uncomfortable or difficult. You will be advised to use a vaginal dilator with a lubricant to help keep the vaginal Side effects walls open and supple. Ask your nurse or While the needles are in place, the tissues doctor to show you how to use them. If they around them will become swollen. This usually are not used, the vagina may close over. settles by the time the needles are removed. The Applying a hormone cream to your vagina treated area will become sore about 5-10 days may help. These creams are available on after the needles or wires have been removed, prescription from your doctor. Regular and this may last for several weeks. Your intercourse may also help to prevent the doctor can prescribe pain-killers to help relieve vagina from narrowing. However, you may the discomfort. not feel ready for intercourse for some time. Vaginal moisturisers can also help. See also Effect on your emotions and sex life on Side effects may continue for several weeks and page 11. then gradually disappear once your course of treatment is over. It is important to tell your doctor • Lymphoedema: Radiation to the groin can if they continue so that they can be treated. increase the risk of swelling in the legs. See page 7 for tips on treating it.

Understanding Cancer of the Vulva  Chemotherapy Complementary therapies Chemotherapy uses anti-cancer drugs to kill or Complementary therapies may help you cope slow the growth of cancer cells. Chemotherapy better with side effects and feel as well as drugs are sometimes given as tablets or, more possible. They may also increase your sense of usually, by injection into a vein (intravenously). control over what is happening to you, reduce It can often be given to you during visits to a your feelings of helplessness, decrease stress hospital or clinic as an outpatient, but sometimes and anxiety and improve your mood. Some it will mean spending a few days in hospital. complementary therapies may reduce the amount of medication needed for pain control. Chemotherapy may be used at the same time as radiotherapy to make treatment more effective. There are many different types of complementary For women with vulvar cancer that has come therapies including acupuncture, massage, back or spread, chemotherapy can help them hypnotherapy, relaxation and yoga. feel better by relieving some of the symptoms of the cancer. Some cancer treatment centres offer complementary therapies such as counselling and massage as part of their services. Ask what’s available at your hospital. Chemotherapy was really tiring. I was so pleased when I finished. I felt I had turned a corner. After treatment: follow-up For the first two years after treatment, it is recommended that you have a checkup every Side effects three months. In the third year after treatment, Most people have some side effects from a six-monthly checkup is recommended. chemotherapy. However, these can usually be Following on from that, you should have an well controlled with medication. Common annual checkup. You can also see your GP or problems include feeling sick (nausea), your specialist doctor if, between follow-up tiredness and a reduced resistance to infections. visits, you have a symptom which you cannot Chemotherapy for vulvar cancer may also explain, lasts more than a week or is not increase any soreness of the skin caused by getting better. radiotherapy. After treatment you may feel anxious rather There are many different types of chemotherapy than more secure. Adjusting to life after cancer and their side effects vary. The same can be difficult if people around you expect life chemotherapy drugs can affect different people to return to the way it was before you were in different ways. Some people find that they are diagnosed with cancer. Everyone will resume able to lead a fairly normal life during their normal life at their own pace but it may take treatment, while others become very tired and some time to balance the need to have regular need to take things much more slowly. Just do as checkups with resuming daily life and making much as you feel like and try not to overdo it. plans for the future.

Having vulvar cancer changed my life but I survived.

10 The Cancer Council New South Wales Effect on your emotions and sex life Most women feel shocked and upset by the idea of having treatment to one of the most intimate and private parts of their body. You may experience a wide variety of emotions, including anger, fear and resentment, all of which are normal. When these feelings are combined with the physical effects of treatment, you may find the closeness of your relationship with your partner is affected. It may also take time to feel interested in and comfortable during sexual intimacy. Sharing your feelings can help bring you and your partner closer together. You may also find it reassuring to talk to another woman who has been through the same experience (see page 12, Taking your time Seeking support). Although the area of the operation usually heals within about six weeks, the emotional Fertility effects will probably take much longer to deal with and require gentleness and sensitivity from Although the vulva is a part of the female sex yourself and the people close to you. organs, your fertility will not be affected by treatment for vulvar cancer. Your doctor can It may take some months before you begin to advise you if you have any concerns about enjoy sexual activity again. Don’t be surprised fertility or sexual problems. if you feel very unsure about it. Remember that you need to make yourself and your healing a priority. Allow yourself to say no to any kind Physical changes of sexual contact that does not feel right. Women who have had vulvar surgery have different feelings about looking at the vulva afterwards. Some women don’t want to look at Physical problems the area. Others want a nurse to be with them People’s sex lives often change during and after when they look for the first time. A nurse can cancer treatment. You may find that your explain what has happened to the area and can interest in sex is diminished and you may also offer professional support and advice. experience some physical sexual problems. Some women prefer to look alone or with a Sometimes surgery causes scar tissue to form partner, friend or relative. Whoever you around the outside of the vagina, narrowing the choose, make sure it is someone you trust and entrance to it. Radiotherapy can cause scarring can talk to openly about your feelings. and narrowing of the vagina itself. Both situations may produce pain during intercourse, If you decide to look at the vulvar area, it is but using plenty of lubricant and trying natural to feel shocked by the changes. If the different sexual positions can help. Water-based labia have been removed, you will be able to and non-perfumed lubricants are best. see the opening to the vagina much more clearly. If the clitoris has been removed, there Using a vaginal moisturiser two to three times a will now be an area of flat skin without the week may also be beneficial. A hormone cream usual folds of the vulva. can also help keep vaginal tissue supple and lubricated. These creams are available on prescription from your doctor.

Understanding Cancer of the Vulva 11 If you don’t feel like having sex, or you find What if I don’t have a partner? penetration uncomfortable, let your partner know. You may also worry that if your clitoris Finding a new partner after surgery to the has been removed, you won’t be able to have vulva can be daunting. It can be difficult to tell an orgasm. This is not necessarily the case, but a new person in your life about the surgery. It’s you may need to take time to explore different natural to be worried about their reaction, and ways to climax. There are many other parts of to know what to tell them and when. It may be your body that, when caressed, can increase helpful to practise what you want to say, and sexual excitement and lead to orgasm. The to talk about the effect of the surgery before breasts, inner thighs, feet and buttocks are all any sexual activity. very sensitive areas of the body. You and your partner can still be intimate without trying to have intercourse or reaching I did a lot of singing and writing to try an orgasm. Sharing your feelings for each other to help get rid of the pain, to sift the in intimate ways such as cuddling, kissing, sugar from the sand. stroking and massage can often be as satisfying as full penetration and climax.

Regaining confidence Seeking support For most women, sex is more than arousal, intercourse and orgasms. It involves feelings of When you are first diagnosed with cancer, it is intimacy and acceptance, as well as being able normal to experience a range of emotions. If to give and receive love. If we are not anxiety or depression is ongoing or severe, tell comfortable with the way we feel about our your doctor about it, as counselling or bodies, this may affect our confidence and medication can help. desire for sex. It will help to talk about your feelings with Some women worry about being rejected by others. Your partner, family members and their partner, or any new partner, because of friends are a good source of support. You changes to their body, whether these changes might also want to talk to: are visible or not. • members of your treatment team • a hospital counsellor, social worker or It is sometimes difficult to communicate sexual psychologist needs, fears or worries with your partner in an intimate relationship. After treatment to the • your religious or spiritual adviser vulva, you may find it even more difficult, but • a support group – see the Cancer support you may be surprised and encouraged by the groups section on page 13 amount of tolerance, trust, tenderness and love • the Cancer Council Helpline on 13 11 20. that exists between you. However, problems can arise because of misunderstandings, differing expectations, and different ways of adapting to changes to your sex life. If this happens, you may find counselling helpful, either with your partner or on your own. You may be able to work through these challenges towards a new closeness and understanding.

12 The Cancer Council New South Wales If you have children, the prospect of telling Cancer support groups them that you have cancer can be frightening and unsettling. The Cancer Council’s When a Cancer support groups offer mutual support and parent has cancer: how to talk to your kids information to people with cancer and their book can help you prepare for this difficult families. It can help to talk with others who conversation. have gone through the same experience. Support groups can also offer many practical suggestions You may find that your friends and family and ways to cope. Your hospital may run a don’t know what to say to you, because they support group; check with your doctor, nurse or are having difficulty with their feelings as well. social worker. Joining a consumer advocacy You may feel able to approach your friends group can also be a rewarding experience for directly and tell them what you need. some people. Alternatively, you may prefer to ask a close family member or a friend to talk with other Call the Cancer Council Helpline on 13 11 20 people for you, and to coordinate practical for information on advocacy or support groups support and offers of help. and telegroup counselling. Some people may feel so uncomfortable that Telephone support groups they avoid you. They may expect you to ‘lead the way’ and tell them what you need. This can Most support groups meet face to face, however be difficult to handle and can make you feel telephone support groups are also available lonely. The Cancer Council’s booklet Emotions through the Cancer Council’s Telephone and Cancer may help at this stressful time. Support Groups program. This is a good option Read it online at www.cancercouncil.com.au or for people who live in remote areas or prefer call 13 11 20 for a copy. not to meet face to face. Groups are supported by two specially trained facilitators. Practical and financial help Talking to someone who’s been A serious illness often causes practical and financial difficulties. You don’t need to face there these alone. Cancer Council Connect can match you with a volunteer who has been through a similar Many services are available to help: cancer experience, and who understands how • Financial assistance, through benefits and you’re feeling. Call 13 11 20 to find out more. pensions, can help pay for the cost of prescription medicines and for travel to medical appointments. • Home nursing care is available through Being able to talk to someone who has community nursing services, or through local experienced cancer is the most palliative care services. marvellous feeling. With that person, • Meals on Wheels, home care services and I can be completely honest with my aids and appliances can make life easier. feelings and fears. To find out more, contact the hospital social worker, occupational therapist or physiotherapist, or the Cancer Council Helpline.

Understanding Cancer of the Vulva 13 Understanding Cancer program Caring for someone with cancer If you want to find out more about cancer and You may be reading this booklet because you how to cope with it, you may find the Cancer are caring for someone with cancer. Being a Council’s Understanding Cancer program carer can be very stressful, especially when the helpful. The program offers practical person you are looking after is someone you information about many of the issues people care about very much. Look after yourself experience after a diagnosis of cancer, during this time. Give yourself some time out, including: what is cancer, cancer symptoms and and share your worries and concerns with side effects, palliative care and diet, exercise someone outside. and complementary therapies. Groups are small, with plenty of time for discussion. Many cancer support groups are open to carers Courses are held frequently at hospitals and as well as people with cancer. A support group community organisations throughout NSW. can offer a valuable opportunity to share Call the Cancer Council Helpline on 13 11 20 experiences and ways of coping. to find out more. There are several support services such as Home Help, Meals on Wheels and visiting nurses who can help you with treatment at home. There are also many organisations and The Cancer Council Helpline groups that can provide you with information 13 11 20 and support. Some of these, such as the Cancer Council Helpline, can let you know about Monday to Friday 9am to 5pm other services that may be of help to you. The Cancer Council Helpline is a service of Carers NSW offers support and information The Cancer Council NSW. There is no for carers. Call 1800 242 636. For a free charge for this service except for the cost copy of The Cancer Council’s Caring for of a local call. The Cancer Council Helpline someone with cancer booklet, call the Cancer is a telephone information and support Council Helpline. service for people affected by cancer. You can talk about your concerns and needs confidentially with specialised oncology health professionals. They can send you written information and put you in touch with appropriate services in your own area. If calling outside business hours, you can leave a message on an answering machine and your call will be returned the next business day.

You can call the Cancer Council Helpline, Monday to Friday, 9am to 5pm, for the cost of a local call.

Cancer Council Helpline ...... 13 11 20

Cantonese and Mandarin ...... 1300 300 935

Greek ...... 1300 301 449

Italian ...... 1300 301 431

Arabic ...... 1300 301 625 Tele-typewriter (TTY) for deaf or hearing-impaired people ...... (02) 9334 1865

14 The Cancer Council New South Wales Information on the Internet Glossary The Internet can be a useful source of chemotherapy information, although not all websites are reliable. The websites listed below are good The use of drugs, which kill or slow sources of reliable information. cell growth, to treat cancer.

computerised tomography (CT) scan Australian A technique that uses x-rays to build The Cancer Council New South Wales up a picture of the body. www.cancercouncil.com.au The Cancer Council Australia human papilloma virus www.cancer.org.au Also called HPV or wart virus. A group of viruses that can cause infection in Gynaecological Cancer Support the skin surface of different areas of the www.gynaecancersupport.org.au body, including the genital area. Cancer Institute NSW www.cancerinstitute.org.au/cancer_inst/patients lymphoedema Swelling caused by a build-up of lymph fluid. This happens when lymph nodes International do not drain properly, usually due to American Cancer Society blockage or removal during surgery. www.cancer.org magnetic resonance imaging (MRI) Cancerbackup www.cancerbackup.org.uk Similar to a CT scan, but this test uses magnetism instead of x-rays to build National Cancer Institute up pictures of the body. www.cancer.gov radiotherapy The use of radiation, usually x-rays or Call the Cancer Council Helpline on 13 11 20 to talk gamma rays, to kill cancer cells or injure to a health professional or to ask for free information them, so they cannot grow and multiply. booklets. Booklets you may find useful include Understanding Chemotherapy, Understanding vulvar intraepithelial neoplasia (VIN) Radiotherapy, Emotions and Cancer, Food and Cancer, and Sexuality for Women with Cancer. This condition occurs in the skin of the vulva and can develop into vulvar cancer if left untreated.

vulva The region incorporating the external sexual organs of a woman. These include the , labia and clitoris.

vulvoscopy An examination of the vulva using a small microscope with a bright light called a colposcope.

Understanding Cancer of the Vulva 15 Understanding Cancer of the Vulva An information sheet for women with cancer, their families and friends.

First published January 2005 Reprinted February 2006 Revised August 2007 © The Cancer Council New South Wales 2007 ISBN 1 92104 154 4 Understanding Cancer of the Vulva is reviewed approximately every two years. Check the publication date above to ensure this copy of the booklet is up to date. To obtain a more recent copy, phone The Cancer Council Helpline on 13 11 20.

Acknowledgements We thank Cancer Backup for allowing its information on cancer of the vulva to be used as a source for this information sheet. We also thank the reviewers of this information: Dr Greg Robertson, Gynaecological Oncologist, Royal Hospital for Women and St George Hospital; Anne Mellon, Gynaecological Oncology Clinical Nurse Specialist, Hunter Centre for Gynaecological Cancer; Jayne Maidens, Clinical Nurse Consultant, Gynaecology Oncology, Royal North Shore Hospital; and Nola Norris, Cancer Voices NSW. Editors: Jane Lewis and Vivienne O’Callaghan Series editor: Jenny Mothoneos Cartoonist: Greg Smith Illustration: Donna Crotty

The Cancer Council New South Wales The Cancer Council is the leading cancer charity in New South Wales. It plays a unique and important role in the fight against cancer through undertaking high-quality research, advocating on cancer issues, providing information and services to the public and patients, and raising funds for cancer programs. This information sheet is funded through the generosity of the people of New South Wales. To make a donation to help defeat cancer, visit The Cancer Council’s website at www.cancercouncil.com.au or phone 1300 780 113. Before commencing any health treatment, always consult your doctor. This information sheet is intended as a general introduction to the topic and should not be seen as a substitute for your own doctor’s or health professional’s advice. All care is taken to ensure that the information contained here is accurate at the time of publication. The Cancer Council New South Wales 153 Dowling Street Woolloomooloo NSW 2011 Cancer Council Helpline: 13 11 20 Telephone: (02) 9334 1900 Facsimile: (02) 9334 1741 Email: [email protected] Website: www.cancercouncil.com.au

CAN1139 Date: 08/07 ABN 51 116 463 846