Coping with vulval cancer

Vulval cancer is one of the most difficult types of cancer to cope with emotionally and physically. The vulva is one of the most private parts of a woman's body so it's normal to feel anxious and upset when you find out you have vulval cancer.

Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all.

There is help and support available. There are things you can do, people who can help and ways to cope with a diagnosis of vulval cancer.

Your feelings

You might have a number of different feelings when you're told you have cancer.

You may feel a range of powerful emotions at first such as feeling shocked, upset and find it difficult to take in anything else that is being said to you. Other emotions include feeling:

• numb
• frightened and uncertain
• confused
• angry and resentful
• guilty
• sad

You may have some or all of these feelings. Or you might feel totally different. You may feel them a few at a time or altogether, leaving you feeling exhausted.

Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all. You need to do what’s right for you to help you cope.

Helping yourself

You may be more able to cope and make decisions if you have information about your type of cancer and its treatment. Information helps you to know what to expect.

Taking in information can be difficult, especially when you have just been diagnosed or given news about your outlook. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask. They can also help you to remember the information that was given. Getting a lot of new information can feel overwhelming.

Ask your doctors and nurse specialists to explain things again if you need them to.

You might feel that you don’t want to know much information straight away. Tell your doctor or nurse. You will always be able to ask for more information when you feel ready.

Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.

You can also do practical things such as:

• making lists to help you
• having a calendar with all appointments
• having goals
• planning enjoyable things around weeks that might be emotionally difficult for you

Talking to other people

You may feel quite isolated and find it difficult to share how you feel. You might also feel embarrassed about having cancer in an intimate area. But talking to your friends and relatives about your cancer can help and support you.

Some of those close to you might be scared of the emotions this could bring up and could be reluctant to talk. They might worry that you won't be able to cope with your situation. Help your family and friends by letting them know if you would like to talk about what’s happening.

It sometimes helps to speak to women who have had similar treatment. Talking to someone who isn't closely involved can be very helpful and give you the listening time you need. You may also benefit from counselling. Do speak to your specialist nurse or doctor who can help you with this. 

Cancer chat

You can chat with other people affected by cancer in our online forum. 

Specialist nurses

Specialist nurses can help you if you’re finding it difficult to cope or if you have any problems. They can get you the help you need. They can also give you information.

Physical problems

Cancer of the vulva and its treatment may cause physical changes in your body. These changes can be very difficult to cope with and may affect the way you feel about yourself. They can affect your self esteem and the way you relate to other people, especially close family and friends.

Pain

Depending on your treatment, your vulval area could be uncomfortable and sore for a time. This could be the case following surgery, or during or after radiotherapy. So you might find it difficult to move about as much, sit down or go out. Things should improve a few weeks after your operation or 2 to 4 weeks following your radiotherapy.

Tell your doctor or nurse as soon as you feel any pain. They need your help to find the right type and dose of painkiller for you. Painkillers work best when you take them regularly.

Tiredness (fatigue)

Tiredness (fatigue) and lethargy can be a problem during and after cancer treatment. Resting but also doing some gentle physical activity can help. 

Early menopause

The ovaries are sometimes affected by radiotherapy. If you are still having periods, they may stop working and you may have an early menopause. Symptoms include hot flushes and sweats. Your nurse will talk to you about how to cope with symptoms. You will no longer be able to have children naturally if you have an early menopause. This can be difficult to come to terms with.

Relationships and sex

The physical changes you have might affect your relationships and sex life. There are things that you can do to manage this.

Coping practically

You and your family might need to cope with practical things including:

• money matters
• financial support, such as benefits, sick pay and grants
• work issues
• childcare
• Blue Badge applications
• help with travel costs
• changes to your house

Talk to your doctor or specialist nurse to find out who can help.  You might be able to get some benefits for yourself and the person caring for you. You might also be able to get grants for heating costs, holidays and other household expenses related to your illness.

Getting help early with these things can mean that they don’t become a big issue later. It may be helpful to see a social worker. Many hospital cancer departments have a social worker available for patients.

Support at home for you and your family

GP and nursing support

Your GP manages your healthcare when you are at home. They can help with any medical problems that come up. They can also make referrals to a community service for you. The availability of the different community services may vary, depending on where you live.

Community or district nurse

These nurses work in different places in your local area and may visit you in your home. They can:

• give medicines or injections

• check temperature, blood pressure and breathing

• clean and dress wounds

• monitor or set up drips

• give emotional support

• teach basic caring skills to family members where needed

• get special equipment such as hospital beds, special mattresses, commodes or bed pans

Community services vary from area to area. Your hospital specialist nurse can tell you what is locally available to you.

Social workers

Social workers can help to support you with your situation at home. They can arrange:

• home helps to help with shopping or housework
• home care assistants for washing and dressing
• meals on wheels
• respite care

Your social worker can also help with money matters by checking you get all the benefits you are entitled to. Or they can advise you about charity grants for things like extra heating costs or special diets.

Contact a social worker yourself by getting in touch with your local social services office. Or ask your hospital nurse or your GP to refer you.

Support groups

You may find it helpful to go to a charity or support group to talk to other people affected by prostate cancer.