Follow-up and recovery

You will have appointments to see your doctor or nurse every few months once your treatment ends. You can talk to them about any concerns you have and you should let them know if you think you have any new symptoms.

If you had lymph nodes removed during surgery or had radiotherapy you are at risk of developing lymphoedema. This is when fluid collects and one or both legs can swell. Your doctor or nurse will talk to you about what you can do to reduce your risk. This includes looking after and protecting your skin.

Many women choose to live a healthier life after treatment for cancer. Things you may wish to do include:

  • eating healthily
  • doing more physical activity
  • giving up smoking
  • cutting down on alcohol.

It’s normal to worry about the cancer coming back or to feel anxious before your hospital appointments. You can talk to your doctor, family or friends for support.

Follow-up

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.

You can talk to your doctor or nurse about any problems or worries at these check-ups. But if you notice any new symptoms or have any problems between appointments, contact your doctor or nurse for advice.

If you had vulval lichen sclerosus (VLS) or lichen planus (LP) before vulval cancer, you should continue to see your specialist for those conditions too. After cancer treatment, you may still need ongoing treatment for the skin. Your specialist will advise you about this.

Many people find that they get quite anxious before their appointments. You may worry about the cancer coming back. This is natural. It can help to get support from family, friends or your special-ist nurse. Or you can speak to our cancer support specialists on 0808 808 00 00. Some other organisations also offer support to people affected by cancer of the vulva.


Lymphoedema

If you had lymph nodes removed during surgery, or if you had radiotherapy, you may develop lymphoedema. This means fluid collects and causes one or both legs to swell.

The lymph nodes are part of the body’s immune system and help fight infection. A fluid called lymph fluid normally flows through these nodes. If the nodes stop working normally or are removed during cancer treatment, the lymph fluid may build up.

Not everyone gets lymphoedema after treatment for cancer of the vulva. But it can start months or years later. There are treatments that can help manage swelling. There are also things you can do to reduce your risk of developing it. Your doctor or nurse may arrange for you to see a specialist lymphoedema nurse for advice.

Reducing your risk of lymphoedema

There are several things you can do to reduce your risk of lymphoedema:

  • Look after your skin. Keep your legs and feet clean and well moisturised. Avoid having very hot baths and showers. Protect your skin from cuts, grazes, insect bites and sunburn. Wear shoes that are the right fit and size for your feet.
  • Look out for the early signs of infection. Wash small grazes and cuts straight away, put on anti-septic cream and cover if needed. Contact your GP straight away if you have signs of infection – for example, if you have flu-like symptoms or if any skin on your legs or feet becomes red, hot or swollen.
  • Keep active. Regular exercise and physical activity will help lymph fluid to drain. Avoid standing in the same position for too long.
  • Keep to a healthy weight. You have a higher risk of lymphoedema if you are overweight. Your GP or practice nurse can tell you what your ideal weight should be. You can also ask them, or a dietitian, for advice and support on health eating.

Managing lymphoedema

To start with, lymphoedema may only cause slight swelling. Contact your cancer doctor, nurse or GP for advice if you have:

  • any leg or foot swelling
  • a tight, heavy or stiff feeling in your legs
  • any skin changes on your legs or feet.

If you have signs of lymphoedema, you should be referred to a clinic for specialist advice. There are lots of things that can be done to reduce the swelling and stop it getting worse.

The specialists at the lymphoedema clinic will give you advice on caring for your skin. They will also show you exercises and ways to massage your legs and feet to help fluid drain. They will give you a support stocking (compression garment) to wear to reduce the swelling. A specialist will measure you for this and give you advice about using it. They may also recommend other treatments for you.

We have more detailed information about preventing and managing lymphoedema.


Well-being and recovery

After treatment, you may just want to get back to everyday life. But you may still be coping with the side effects of treatment, adjusting to physical changes or dealing with some difficult emotions. Recovery takes time, so do not rush it and try to be kind to yourself.

Some people choose to make lifestyle changes to improve their health and well-being. Even if you had a healthy lifestyle before cancer, you may be more focused on making the most of your health.

Eat healthily

A healthy, balanced diet gives you more energy and will help you to recover. Talk to your GP, specialist nurse or a dietitian if you have any special dietary or medical needs. We have information about healthy eating that you may find helpful.

Be physically active

Being physically active after cancer treatment can:

  • boost your energy levels
  • help you keep to a healthy weight
  • reduce stress and fatigue.

It can also reduce your risk of:

  • bone thinning, if you have had an early menopause
  • health problems such as diabetes, heart disease and some cancers.

Your GP or cancer doctor may be able to refer you to an exercise group for people with cancer. Ask them for advice about what is available in your local area.  We have more information about keeping active.

Stop smoking and stick to sensible drinking

If you smoke, giving up is the healthiest decision you can make. Stopping smoking reduces your risk of heart and lung disease, bone thinning (osteoporosis), and smoking-related cancers. If you want to stop, your GP can give you advice. We have more information about giving up smoking.

Alcohol has also been linked to a higher risk of some types of cancer and to weight gain. If you drink alcohol:

  • do not regularly drink more than 14 units in a week
  • spread the amount you drink in a week over three or more days
  • try to have several alcohol-free days every week.

There is more information about drinking alcohol at drinkaware.co.uk


Complementary therapies

Some people use complementary therapies to help them relax or cope with treatment side effects. Some hospitals or support groups offer therapies such as relaxation or aromatherapy. Ask your cancer doctor or nurse what is available in your area. We have more information about complementary therapies.


More help and support

Practical help

Before you start treatment, tell your doctor or nurse about any practical help you might need at home as you recover. They can give you advice and may be able to arrange help or equipment for you. If you need more support, talk to them again or contact your GP.

Support groups

A support group gives you the chance to talk to other people in a similar situation to you. It can be a place to share experiences, ask questions and support each other.

You are not expected to talk about anything you do not want to, and it can take a few visits to feel comfortable enough to talk about personal things. Not everyone finds talking in a group easy. But you can go along to see what it is like before you decide to get involved. You can search for groups in your area or ask someone from your healthcare team. You can also ask our cancer support specialists for more information.

Online support

If you use the internet, you can join an online support group or chat room. There are groups about different types of cancer. There are also more general groups where people chat about practical and emotional issues after treatment.

You can share your own thoughts and feelings by posting messages for others to read and reply to. Or if you prefer, you can just read other people’s comments or posts. These messages can sometimes be uplifting. They can also be sad and difficult to read. It may help to know that other people feel like you do. You may feel less alone and learn how other people cope after treatment.

Online groups are also easy to leave, without any need for personal contact or explanations. Our Online Community offers this type of support. It is quick and easy to join. You can talk to people in our forums, blog about your experiences, make friends and join support groups.

Everyone is so supportive on the online community, they know exactly what you’re going through. It can be fun too. It’s not all just chats about cancer.

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