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Managing side effects of treatment for vulvar cancer

It will take some time to recover from the physical and emotional changes caused by treatment for vulvar cancer. Treatment side effects can vary – some women experience many side effects, while others have few. Side effects may last from a few weeks to a few months or, in some cases, years or permanently. This page includes ways to reduce or manage the discomfort that side effects may cause.

It is common to feel very tired and lack energy during and after cancer treatment. Your tiredness may continue for a while after treatment has finished. Some women find it takes them a few years to feel well again.

Tips for managing fatigue

  • Plan your day. Set small manageable goals and rest before you get too tired.
  • Keep your schedule as regular as possible, e.g. avoid sleeping in, go to bed at your usual time, and take a short nap if you get tired throughout the day.
  • Ask for and accept offers of help from family and friends, e.g. with shopping, errands and childcare.
  • Aim to eat a healthy, well-balanced diet.
  • Regular light to moderate exercise has been shown to reduce fatigue. Even a walk around the block can help. Talk to your doctor about the amount and type of exercise suitable for you. A physiotherapist or exercise physiologist can develop a program that is right for you.
  • Don’t expect to be able to instantly do everything you used to do. Gradually build up the amount of activity you do each day.

 

Treatments for vulvar cancer can also affect the vagina. Radiation therapy targeted to the vulva can make the area tender during treatment and for a few weeks afterwards. In the long term, this irritation can cause scarring, which may make the vagina drier, narrower, shorter and less flexible (vaginal stenosis).

Surgery for vulvar cancer may cause scar tissue to form around the outside of the vulva, narrowing the entrance to the vagina. This can make intercourse painful. Changes to your body can affect the way you feel about yourself (your self-esteem) and make you feel self-conscious. You may feel less confident about who you are and what you can do. Try to see yourself as a whole person (body, mind and personality) instead of focusing on the parts that have changed.

Tips for managing changes to the vagina

  • Keeping the vagina open and supple can make vaginal sex more comfortable, but it is important even if you don’t plan to be sexually active.
    It will allow your doctor to do a vaginal examination at follow-up visits to check for a recurrence of cancer, as well as regular cervical screening tests.
  • If cancer treatment has narrowed or shortened the vagina, you may be advised to use a vaginal dilator to help keep the vagina open and prevent it from closing over.
  • Vaginal dilators are tube-shaped devices made from plastic or rubber. They come in different sizes. Begin with the smallest dilator and progress to larger ones as each size becomes more comfortable.
  • Find a quiet, private place. Using a water-based lubricant, slowly insert a dilator into the vagina. Leave it there for 5–10 minutes. You will need to do this 3–5 times a week, usually for many months.
  • Your nurse, doctor or physiotherapist will provide the dilators or let you know where to buy them, and give you more detailed instructions about  when and how to start using them.

Women who have had surgery affecting their vulva have different feelings about looking at changes to their genital area. If you decide to look at your vulva, it is natural to feel shocked by any changes. If the labia have been removed, you will be able to see the opening to the vagina more clearly. If scar tissue has formed around the outside of the vagina, the entrance to the vagina will be narrower. If the clitoris has been removed, there will now be an area of flat skin without the usual folds of the vulva.

Radiation therapy may make your skin dry, itchy and tender in the treatment area. Your skin may temporarily look red, tanned or sunburnt, and then peel or blister. These skin reactions can be painful and may worsen in the two weeks after treatment finishes, but will gradually get better after that.

Tips for managing changes to the vulva

  • After vulvar surgery, some women don’t want to look at the area or prefer to do it alone or with a partner or close friend. Others want a nurse to be with them.
  • After radiation therapy, use lukewarm water to wash your genital area and gently pat it dry with a towel. Avoid using any perfumed products or
    talcum powder on the area.
  • Talk to your treatment team about creams to soothe and protect the skin, and also about pain relief if necessary.

Radiation therapy and surgery to the vulva can cause bladder and bowel problems. Most side effects are temporary, but for some women, the changes are permanent. Talk to your treatment team for more information.

Cystitis – Radiation therapy can irritate the lining of the bladder. You may feel like you want to pass urine frequently or you might experience a burning sensation when you pass urine. This is called cystitis. Try to drink plenty of water to make your urine less concentrated. Over-the-counter urinary alkalinisers (e.g. Ural) can help by making the urine less acidic. Your doctor may also prescribe medicine to treat cystitis.

Urinary incontinence – Incontinence is when urine leaks from your bladder without your control. Bladder control may change after surgery or radiation therapy to the vulva or vagina. Some women find they need to pass urine more often or feel that they need to go in a hurry. Others may leak a few drops of urine when they cough, sneeze, strain or lift. For ways to manage incontinence, talk to the hospital continence nurse or physiotherapist. They may suggest exercises to strengthen your pelvic floor muscles. For more information, visit bladderbowel.gov.au, or contact the Continence Foundation of Australia on
1800 33 00 66.

Difficulty urinating – After surgery to the genital area, your urine stream may spray in different directions or off to one side. This can be messy and frustrating. If you usually squat or crouch over the toilet seat, it may help to sit down towards the back of the toilet seat. Camping stores, some pharmacies and online retailers also sell reusable silicone funnels (often known as female urination devices) that you can use to direct the urine. Over time, the urine stream may flow in a more manageable way.

Changed bowel movements – After surgery or radiation therapy, some women notice bowel problems. You may experience diarrhoea, constipation or stomach cramps. In rare cases, the bowel may become blocked (bowel obstruction). Your doctor may be able to prescribe medicines to help prevent or relieve these side effects. They can also refer you to a dietitian who can suggest changes to your diet.

Blood in urine or bowel movements – The blood vessels in the bowel and bladder can become more fragile after radiation therapy. This can cause blood to appear in your urine or bowel movements, even months or years after treatment. Always seek advice from your specialist or GP if you notice new or unusual bleeding. Keep in mind that it may not be related to your treatment.

Lymphoedema is a swelling of part of the body. In the case of vulvar cancer, lymphoedema usually affects a leg or, less commonly, the genitals. Sometimes the swelling can take months or years to develop, and some women who are at risk never develop lymphoedema. Although lymphoedema may be permanent, it can usually be managed. Gentle exercise, compression stockings, and a type of massage known as lymphatic drainage can all help to reduce the swelling. Talk to a lymphoedema professional about tailoring a treatment plan for you.

Tips for managing lymphoedema

  • Treat lymphoedema early so that you can deal with the problem quickly and avoid symptoms becoming worse.
  • Visit lymphoedema.org.au to find a lymphoedema practitioner or ask your doctor for a referral. Ask your GP if you are eligible for a Medicare rebate for sessions with a lymphoedema practitioner.
  • Maintain a healthy body weight.
  • Reduce the risk of infection by keeping your skin moisturised and caring for your nails.
  • Avoid cuts, scratches, burns, insect bites, sunburn and injections in your legs.
  • Wear a professionally fitted compression garment, if advised by your lymphoedema practitioner.
  • Do leg exercises to move fluid out of the affected area and into other lymph channels.
  • If your legs are swollen or hot, let your doctor or nurse know as soon as possible.

Download our fact sheet ‘Understanding Lymphoedema’

In women who have not yet been through menopause, some treatments for vulvar cancer can cause early (induced) menopause. Your periods will stop and you may have symptoms such as hot flushes, insomnia, dry or itchy skin, mood swings, or loss of interest in sex (low libido). Loss of oestrogen at menopause may also cause bones to weaken and break more easily (osteoporosis).

After menopause, you will not be able to become pregnant. If this is a concern for you, talk to your doctor before treatment begins.

Download our booklet ‘Fertility and Cancer’

Tips for managing menopause symptoms

  • Talk to your doctor about the benefits and risks of hormone replacement therapy (HRT). If taken after natural menopause, HRT containing oestrogen may increase the risk of some diseases. If you were already on HRT when the cancer was diagnosed, you will need to weigh up whether to continue.
  • Ask your doctor about having a bone density test or taking medicine to prevent your bones from becoming weak. Regular exercise will help keep your bones strong. Osteoporosis Australia has more information or call 1800 242 141.
  • Meditation and relaxation techniques may help reduce stress and lessen symptoms. Call 13 11 20 for a free copy of our relaxation and meditation CDs. You can also download various apps to your phone.
  • Cognitive behaviour therapy has been shown to help women manage their symptoms. Ask your GP for more information.

Vulvar cancer can affect your sexuality in physical and emotional ways. Treatment can cause physical side effects such as tiredness, scarring, narrowing of the vagina, swelling and soreness. The experience of having cancer can also reduce your desire for sex (libido).

Many women are able to have sexual intercourse after treatment. Others may have to explore new ways to enjoy sex, but remember that for most people, sex is more than just intercourse. It involves feelings of intimacy, as well as being able to give and receive pleasure and love.

Tips for managing sexual changes

  • Give yourself time to get used to any physical changes. Let your partner know if you don’t feel like having sex, or if you find penetration uncomfortable.
  • Talk to your doctor about ways to manage side effects that change your sex life. This may include using vaginal dilators and creams.
  • Explore other ways to climax, such as caressing the breasts, inner thighs, feet or buttocks.
  • Extra lubrication may make intercourse more comfortable. Choose a water-based or silicone-based gel without perfumes or colouring.
  • Talk about your feelings with your sexual partner or doctor, or ask for a referral to a sexual therapist or psychologist.
  • See ‘Intimacy and sexuality for women with gynaecological cancer – starting a conversation’ for more tips.

Download our booklet ‘Sexuality, Intimacy and Cancer’