Late effects of head and neck cancer treatment

Sometimes treatment side effects do not go away, or they start months or years after treatment has ended. These are called:

• long-term effects – if they begin during treatment, or shortly after treatment has ended, and last longer than 3 months
• late effects – if they begin months or even years later, as a delayed response to treatment.

We use the term late effects to include both long-term and late effects.

Doctors aim to provide the best treatment with as few side effects as possible. With improved treatment for head and neck cancer people are living for longer. Newer ways of giving radiotherapy, such as intensity-modulated radiotherapy (IMRT), may also help to reduce the risk of some late effects, such as a dry mouth.

Doctors and nurses are also learning more about how to manage late effects.

There are usually things that can be done to treat and manage late effects of head and neck cancer treatment.

Different specialists who can help you with late effects include:

Looking after your mouth and teeth is very important. It helps to protect you from dental problems. You may be at higher risk of these because of your treatment. A dry mouth increases your risk of tooth decay.

You need regular check-ups with a dentist or dental hygienist every 3 to 6 months. Following a regular mouth care routine is very important. You can agree this with your dentist or dental hygienist. They will also prescribe a fluoride toothpaste for you to use. They can show you how to check your mouth which you should do daily. Other important things you can do to protect your teeth are:

• not smoking
• reducing sugary and acidic foods and drinks.

Read more about mouth care after head and neck cancer treatment.

Sometimes, treatment for head and neck cancers can affect your speech or voice. Your doctor, speech and language therapist (SLT) or nurse will explain any possible changes before your treatment. For some people, these changes are minor. Their speech or voice returns to normal, or near normal, as the area heals. For others, it may involve permanent changes to the way they speak or to their voice.

Your SLT assesses changes in your speech and voice. They can give you speech therapy exercises to do and advice on looking after your throat.

We have more information about changes to speech and voice, and what might help.

Surgery to remove lymph nodes in the neck (neck dissection) can cause changes in the neck and shoulder. Radiotherapy can cause similar changes, such as tightness in the skin or feelings of numbness in the area.

It is important to get to know how the skin on your neck feels. If you notice anything different, contact your specialist doctor or nurse. Changes in your neck and shoulders can take up to 6 months to develop. Stiffness usually develops first before you have any pain. A physiotherapist will show you exercises to improve movement and reduce pain. Doing these regularly can help prevent your shoulder becoming stiff.

Read more about effects of treatment on the neck and shoulders and what might help.

If you had pain during treatment, it usually gets better as your tissues heal. Sometimes pain or discomfort lasts for several months or more.

Pain can happen for different reasons. It may be caused by a late effect of treatment such as a stiff jaw (trismus), scar tightness or nerve damage.

Always tell your doctor if you have a new pain or pain that is getting worse. They can arrange tests to find out the cause. It is natural to feel anxious if you develop pain. But it is important to get it checked out as soon as possible so that you can have treatment for it.

If a nerve was damaged during surgery, this may cause a change in sensation or numbness in that area. It can take up to 2 years for nerves to heal and normal feeling to return. But if the nerve was cut during surgery to remove the cancer, changes in sensation will be permanent.

If you have numbness or a change in sensation in a part of your head or neck, take extra care to protect it. If you shave, be careful around skin that is numb. It is safer to use an electric razor. Be careful not to expose the numb area to very hot or very cold temperatures.

Some chemotherapy drugs can cause numb, tingling or painful hands or feet. This is called peripheral neuropathy. These symptoms usually begin to improve gradually a few months after chemotherapy treatment ends. Sometimes damaged nerves do not completely recover, and some people have long-term changes. But there are ways to manage the symptoms of peripheral neuropathy.

Managing pain

Different types of painkillers are used for mild, moderate and severe pain. Once your doctors and nurses have assessed your pain, they will prescribe the best painkillers to help control it.

Other drugs may also be used depending on the type of pain you have. You may take these with painkillers or on their own.

Pain caused by nerve damage can be treated with anti-nerve pain drugs. If muscle spasms are making your pain worse, you may be prescribed a drug to help relax the muscles. Drugs called steroids may be used to reduce swelling.

Physiotherapy and massage may also help to ease pain. A physiotherapist can also show you helpful exercises that stretch the tissues. Massage and warmth can also ease tightness or muscle cramps in the neck or shoulders.

Some people use a heat pack to warm the area. If you want to try this, it is very important to follow the manufacturer’s safety instructions. Make sure the pack is warm and not hot, especially if you have any loss of sensation in the area. Always check with your physiotherapist, doctor or nurse before using a heat pack or massaging the affected area.

Sometimes pain is caused by lymphoedema. Your nurse can refer you to a lymphoedema specialist for treatment which will improve the pain.

Some people find non-drug treatments and complementary therapies helpful in managing pain.

After surgery and radiotherapy, it is common to have some swelling in your face or neck. This usually goes away within a few weeks. You may have more risk of developing long-term swelling if:

• you had surgery to remove lymph nodes from your neck
• you had radiotherapy after surgery.

The swelling happens because lymphatic system, which normally drains fluid away, has been damaged by treatment. This is called lymphoedema. It is important to look after the skin on your head, face and neck if you had any lymph nodes in your neck removed. This can help to reduce the risk of developing lymphoedema.

Lymphoedema can also affect tissues inside the neck, such as the throat or larynx (voicebox). This can cause problems with speaking, swallowing or breathing. Lymphoedema may be worse in the morning and improve as the day goes on.

Always tell your GP or cancer specialist if you notice swelling in your face or neck or tightness in the muscles. They can assess you to find out the cause. Lymphoedema is usually treated by a lymphoedema therapist.

There are different ways head and neck lymphoedema can be treated.

Feeling extremely tired (fatigue) is one of the most common side effects of head and neck cancer treatment. It is not unusual for this to last for months after treatment. In some people, tiredness continues for a year or more.

Sometimes, tiredness is linked to other problems, such as

• pain
• eating difficulties
• depression
• sleep problems
• an underactive thyroid gland
• having a low number of red blood cells (anaemia).

Managing these problems may help to improve tiredness. It is important to find out if there is a treatable cause for your tiredness. For example, radiotherapy for head and neck cancers can sometimes cause the thyroid to become underactive (hypothyroid). The thyroid gland is in the front of the neck and makes hormones.

Symptoms of an underactive thyroid gland can include feeling tired and lethargic. An underactive thyroid can develop months or years after treatment.

Tell your doctor or nurse how you are feeling. They can take blood samples to find out if your thyroid gland is underactive or if you have anaemia (low levels of red blood cells). These conditions can be treated with medicines.

We have more information about managing tiredness.

The physical and emotional effects of cancer and its treatment may affect your sexual confidence. You may be left with a low sex drive (libido) or have sexual difficulties because of the physical effects of treatment.

If you are coping with changes to your face, mouth and neck as a result of surgery or radiotherapy it can take time to adjust. You may need time to recover and adapt to body changes before you feel comfortable about having sex.

Most difficulties will improve over time. Having any symptoms or late effects managed may also help to improve things. If you have a partner talking openly with each other can have a positive effect on your relationship. It can make you feel more comfortable with each other

If you are having problems with your sex life talk your doctor or nurse for advice. They may arrange for you to talk to a counsellor, psychologist, psychiatrist or sex therapist. There are different people and organisations who can help. We have more information about cancer and sex.

Menopause

Depending on your age chemotherapy may cause menopause. Menopause can reduce your sex drive and cause vaginal dryness and hot flushes. This can make having sex difficult. Your doctor can do blood tests to check if you are menopausal. You can talk to them about hormone replacement therapy (HRT) or other ways of coping with menopausal symptoms.