Long term and late effects

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.

Booklets and resources

Possible late effects

How likely treatment is to cause late effects depends on several things, including:

  • the size and location of the cancer
  • the type and amount of treatment you had
  • whether lymph nodes (glands) in the neck were treated
  • your general health before treatment started.

Some side effects of treatment often improve over time. Always tell your specialist doctor or nurse if side effects are not getting better, or if you develop new symptoms. They can tell you what symptoms to look out for. You can always contact and sometimes see your cancer specialist doctor or nurse between clinic appointments. You can also contact your GP or dentist if you are concerned.

Your cancer doctor will explain if your symptoms are likely to be from your treatment. Sometimes you may need to have tests to find out the cause. If you do have late effects there are things that can be done to treat and manage them.

Who can help you manage the late effects of head and neck cancer treatment?

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:

  • Specialist doctors

    These could be head and neck surgeons, cancer specialists (oncologist), or a plastic surgeon.

  • Specialist nurse

    A nurse who gives information and support on cancer and managing side effects.

  • Speech and language therapist (SLT)

    An SLT is a specialist who assesses problems with speech, voice and swallowing and teaches you how to manage and improve them.

  • Dietitian

    A dietitian is someone who gives information and advice about food and food supplements.

  • Dentist

    A dentist is an expert in treating problems or conditions that affect the teeth and gums.

  • Restorative dental consultant

    This is a consultant dentist who rehabilitates the teeth. This can include removable prostheses (obturators), removable dentures, bridges and implants to help with your eating, speech, dry mouth and appearance.

  • Physiotherapist

    A physiotherapist gives treatments and exercises to help with reduced movement in the jaw, neck or shoulders and encourages safe physical activities.

  • Dental hygienist

    A dental hygienist is someone who cleans teeth and teaches you how to keep your mouth clean and prevent tooth decay, manage gum disease.

  • Occupational therapist (OT)

    An OT gives information, support and aids to help people with tasks such as washing and dressing.

  • Lymphoedema specialist

    A health professional, usually a nurse or physiotherapist, who gives advice and support about coping with lymphoedema.

  • Psychologist or counsellor

    This is someone who is trained to listen to people’s problems and help them find ways to cope.

Dry mouth and changes to your saliva

Radiotherapy or chemoradiation to the head or neck can affect your salivary glands. This means that you may not make as much spit (saliva) as before and so your mouth may become dry.

Your salivary glands may gradually recover after treatment finishes, but your saliva may be thicker and sticky. Some people have a dry mouth permanently.

We have more information about how to cope with changes to your mouth or saliva.

Looking after your mouth and teeth

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.

Changes to the way you eat and drink

Surgery or radiotherapy for head and neck cancers can change how you eat and drink. Many people find this gets easier after treatment finishes. Side effects such as pain, swelling, feeling sick and tiredness start to get better.

A speech and language therapist (SLT) can teach you exercises and techniques to help you chew and swallow. You may also see a dietitian who can talk to you about how to increase the nutrients and calories in your diet. These health professionals can help you to manage different problems so that you can enjoy eating food again.

Read more about how treatments may affect the way you eat and drink, and how to manage problems with eating.

Effects on speech and voice

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.

Jaw stiffness or changes to the jaw

After radiotherapy or surgery to the head and neck area, the muscles that open and close your mouth may become stiff. This can reduce how wide you can open your mouth and cause jaw stiffness (called trismus). If you have been given exercises to do to help to prevent this it is important to do them.

Rarely, after radiotherapy to the head and neck, the blood supply to the jawbone may not be as good as before. This may cause a serious condition called osteoradionecrosis.

We have more information about jaw problems and what can help.

Effects on the neck and shoulder

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.

Effects on hearing

Treatment for some types of head and neck cancer, such as nasopharyngeal cancer, can sometimes affect your hearing. Hearing loss may sometimes come on gradually in the first 2 years after treatment.

Tell your cancer doctor or nurse if you have problems with your hearing. They can refer you to a hearing specialist for an assessment and tests. There are different treatments that may help. Radiotherapy or the chemotherapy drug cisplatin may cause ringing in the ears (called tinnitus). If it does not improve you can be referred to a tinnitus clinic to help you to manage it.

We have more information about the effects on hearing and what might help.

Pain or numbness

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.

Sore mouth

After radiotherapy to the head and neck you may be more likely to get infections or ulcers in your mouth. Your mouth may be more sensitive to spicy, salty, hard or crunchy foods. It is important to continue to look after your mouth. Always ask your doctor or nurse for advice. They can check for signs of infection and prescribe treatment for you.

Diluted Difflam® mouthwash can help with pain and swelling in the mouth and throat (pharynx). Using a warm saltwater rinse can also help. Treatments, such as Gelclair® and Episil® are used to coat the inside of the mouth and protect sore areas. Your doctor may advise you to use them about an hour before eating.

Lymphoedema

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.

Changes in how you look

Treatment for head and neck cancers can cause changes to how you look. This can affect how you think and feel about your body. This is called your body image. If your appearance has changed, you will need time to get used to this and to adapt. Your specialist team at the hospital can give you support and advice to help you adjust.

Some head and neck clinical nurse specialists and organisations, such as Changing Faces, offer specialist skin camouflage services. This might be useful if you have had skin grafts or have visible scars you would like to cover up. We have more information about different ways to manage body changes.

If your body image concerns are difficult to cope with, or you are avoiding social situations, talk to your doctor or nurse. They can usually refer you to a counsellor or psychologist for talking therapies. Cognitive behavioural therapy (CBT) is a talking therapy that can be helpful for people with body image concerns.

Tiredness

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

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.

Changes to memory and concentration

After cancer treatment, some people have difficulty concentrating and remembering things. Doctors call these cognitive changes. Changes in memory or concentration are usually mild. They often get better within a year of finishing treatment. Sometimes they can go on for longer or have more of an impact on your day-to-day life.

If you are having these problems, talk to your doctor. They may arrange for you to have tests, such as blood tests or a scan. They can also check for any other possible causes for your symptoms.

There are different things you can do to help you to manage cognitive changes.

Effects on your sex life

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.

Getting support

It may take several months to recover from treatment. It can be hard if treatment has changed your appearance, how you eat or drink, or your voice. This may also affect your body image but there are ways to help you to manage any changes.

Dealing with any late effects can take a lot of effort. You may also still be coping with difficult feelings or worries about the cancer coming back.

Talking to your family and friends and health professionals about how you feel means they can support you. If feelings of low mood do not improve talk to your head and neck cancer team, or GP. There are different types of support they can help you with.

There are also national support groups that you may find helpful:

  • The Mouth Cancer Foundation
    The Mouth Cancer Foundation
    gives information and support to people affected by head and neck cancers.
  • Changing Faces
    Changing Faces
    offers advice and information to anyone who is affected by a change in their appearance.
  • Let's Face It
    Let's Face It provides information and support for people with facial disfigurements.

Macmillan is also here to support you. If you would like to talk, you can:

Related pages

About our information

  • References

    Below is a sample of the sources used in our late effects of head and neck cancer treatment information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk

    Nilsen M L, Belsky MA et al. Late and long term treatment-related effects and survivorship for head and neck cancer patients. Current treatment options in oncology. 2020. Volume 21. Issue 12.

    Machiels J.-P, Leemans C. R. et al. Squamous cell carcinoma of the oral cavity, larynx, oropharynx and hypopharynx. EHNS-ESMO-ESTRO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Annals of Oncology, 2020. Volume 31, Issue 11, Pages 1462-1475.

  • Reviewers

    This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Senior Medical Editor, Dr Chris Alcock, Consultant Clinical Oncologist.

    Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.

Date reviewed

Reviewed: 01 April 2022
|
Next review: 01 April 2025
Trusted Information Creator - Patient Information Forum
Trusted Information Creator - Patient Information Forum

Our cancer information meets the PIF TICK quality mark.

This means it is easy to use, up-to-date and based on the latest evidence. Learn more about how we produce our information.