Long term and late effects

There are different terms used to describe side effects that develop after treatment for head and neck cancer, or side effects that you still have after treatment is over. The two most commonly used terms are:

  • long-term effects
  • late effects.

Long-term effects begin during, or shortly after, treatment and do not go away in the 6 months after treatment. They may go away eventually on their own. Symptoms may slowly get better over 1 or 2 years after treatment ends, or even longer. Sometimes long-term effects are permanent.

Late effects are a delayed response to treatment. They do not appear during treatment, but can happen months or even years later.

In this information, we use the term late effects to include both long-term and late effects.

Doctors and researchers are trying to make sure people get the best treatment but have as few side effects as possible. Treatment for head and neck cancer is always developing and people are living for longer because of improved treatments. We are also learning more about late effects and how they can be managed.

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

  • the size of the cancer
  • where the cancer was
  • your general health before treatment started
  • the type of treatment you had
  • how much treatment you had
  • whether lymph nodes (lymph glands) in the neck were treated.

There are things you can do to manage late effects. These effects often get better over time as you recover. Tell your cancer doctor or specialist nurse about any side effects that have not gone away or if you have new symptoms.

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

When your treatment has finished, it is natural to want to put the cancer behind you and move forward in your life. Adjusting to changes after treatment takes time. It can be frustrating to still have side effects.

But there are often things that can be done to treat and manage them. Your specialist doctor will see you regularly in outpatient appointments. You will need to go to appointments less often over time.

As well as specialist doctors and surgeons, there are other specialists who can help. These may include the following:

  • Restorative dentist

    A dentist who designs prostheses (obturators), implants and dentures to help with eating, speech and appearance.

  • Dental hygienist

    A dental hygienist can teach you how to keep your mouth clean and prevent tooth decay.

  • 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.

  • Specialist nurse

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

  • Dietitian

    A dietitian can help you meet your nutritional needs.

  • Physiotherapist

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

  • Occupational therapist

    An occupational therapist can help with ongoing tiredness (fatigue).

  • Lymphoedema specialist

    A lymphoedema specialist can help manage fluid build-up in the tissues (lymphoedema).

  • Psychologist or counsellor

    A psychologist or counsellor can help you adjust to changes after treatment.

Other sources of support

As you recover from cancer treatment, you may need to re-learn skills, such as swallowing or speaking. You may need to do things like regular mouth, jaw, throat, neck or shoulder exercises. There may also be other changes in your day-to-day life you need to adjust to.

Dealing with these changes can take a lot of effort and determination. It is normal to have ups and downs, and there may be times when you do not feel you are making progress.

It is important to have people around who can support you. As well as your healthcare team, this may include a partner, family or friends. If possible, take someone with you to your hospital appointments. This may help them understand what you need to do for your recovery so they are in a better position to help you.

Sometimes it is easier to talk to someone who is not close to you or involved in your care. This could be a counsellor or members of a support group who have been through a similar experience.

Many treatment centres have health and well-being events for people who have had head and neck cancer. These help patients who are dealing with the physical and emotional late effects. Speak to your specialist nurse about what is available in your local centre.

Social networking sites can help you connect with people, share information, and give and get support. Our Online Community is a good place to do this. You can also talk to our cancer support specialists on the Macmillan Support Line on 0808 808 00 00.

A 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.

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 that it gets easier to eat after treatment finishes. This is because side effects such as pain, swelling, feeling sick and tiredness are improving.

We have more information about how treatment for head and neck cancer may affect the way you eat and drink, and what might help.

Effects on speech and voice

Changes to your lips, teeth, tongue, mouth, nose or throat can affect your speech or the sounds you make for speech (voice). These changes may be mild and recover as tissues heal. But for some people, they last longer or may be permanent.

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

Stiffness or pain in the jaw

Radiotherapy or surgery to the head and neck area can cause jaw stiffness. Jaw stiffness can develop a few weeks or sometimes months after treatment. The amount of stiffness varies from person to person.

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

Effects on hearing

Hearing can sometimes be affected after treatment for some types of head and neck cancer, such as nasopharyngeal cancer. Hearing loss may start slowly in the first 2 years after treatment. Your cancer specialist will have told you if your hearing could be affected.

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

Effects on the neck and shoulders

Surgery to the neck may cause changes in your neck and shoulders. Some of these changes may happen straight after surgery. Others may develop months afterwards.

It is important to get to know how your neck feels after surgery for a head and neck cancer. If you feel anything new, you should contact your specialist nurse or consultant.

We have more information about the effects of treatment on the neck and shoulders and what might help.

Pain or numbness

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

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.

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. Sometimes it may be a symptom of cancer coming back.

Surgery may affect nearby nerves and cause a change in sensation or numbness in that area. This often improves as the nerves heal. This can take up to 2 years. If the nerve was cut, changes in that area will be permanent.

Pain can be a useful warning to protect us against injury. If you have numbness or a change in sensation in a part of your head or neck, take extra care to protect it. Sometimes an area that is numb can be injured without you noticing.

If you shave, be careful around skin that is numb. It is safer to use an electric razor. You will also need to be careful not to expose the numb area to very hot or very cold temperatures.

Sore mouth

Radiotherapy to the head and neck often causes a sore mouth. This usually gets better within a few weeks. But you may be more likely to get infections or ulcers in your mouth. If you have a sore mouth, it is still important to continue with regular mouth care.

Other causes of pain or numbness

Sometimes pain is caused by lymphoedema. Your doctor can refer you for treatment for this.

Some chemotherapy drugs can affect nerves and cause symptoms such as pins and needles, numbness or pain to the hands and feet. This is called peripheral neuropathy.

We have more information about pain and how to manage it.

Changes in how you look

Treatment for head and neck cancers can change your body. This may affect the picture you have in your mind of how you look, and how you think and feel about your body (your body image).

There are skin camouflage products that can help reduce the difference in skin colour and the appearance of scars. Some skin camouflage products can be applied to a facial prostheses to match skin tone.

Swelling of the face or neck (lymphoedema)

After surgery for head and neck cancer, it is common to have some swelling in your face or neck. This usually goes away within a few weeks.

You are at greater risk of developing long-term swelling if:

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

The swelling happens because the lymphatic system, which normally drains fluid away, is not working properly. This is called lymphoedema.

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

We have more information about lymphoedema, how to reduce your risk of developing it and how it is managed.

Tiredness

Feeling extremely tired (fatigue) is one of the most common side effects of head and neck cancer treatment. Sometimes, tiredness is linked to pain. It can also be because of:

Radiotherapy for head and neck cancers can sometimes cause the thyroid gland to become underactive (hypothyroid). This can develop months or years after treatment. The thyroid gland is in the front of the neck and makes hormones. These hormones control all the cells in our body so that it is able to work normally. If we do not produce enough thyroid hormones, the cells and organs in our body slow down.

Feeling tired and lethargic is one of the symptoms of an underactive thyroid. If you are at risk of developing an underactive thyroid, you will have yearly blood tests to check it is working normally. It can be treated with tablets that you take every day.

We have more information about managing tiredness.

Changes to your concentration and memory

After treatment for a head and neck cancer, some people have difficulty concentrating and remembering things. Doctors call these cognitive changes (chemo brain).

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.

We have more information about cognitive changes.

Effects on your sex life

The physical and emotional effects of cancer and its treatment may affect your sexual confidence or ability to have sex. You may lose interest in sex, feel unattractive or worry that you will never be able to be sexually active. For some people, these problems continue after treatment is over.

After treatment, some people have problems with their body image and self-esteem. Others may be left with a low sex drive (libido) or have sexual difficulties as a result of the physical effects of treatment. Changes to your face, mouth and neck can change how you feel about kissing and having sex. Most difficulties will improve over time.

You may feel too exhausted to have sex during treatment and for a while afterwards. Most people find that this gradually improves, but occasionally it can last for months or even longer.

If you have problems with pain, this may affect your sex drive. Controlling the pain may improve your desire to have sex.

Some treatments can temporarily affect periods. Often periods return to normal after treatment ends but sometimes they stop permanently. This can lead to an early menopause.

We have more information about cancer and your sex life.

About our information

  • 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.

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