About late effects of head and neck cancer treatment

Most people have side effects during and for a few weeks after treatment for head and neck cancer. But sometimes certain side effects may last longer or be permanent. These are called long-term effects.

Others may develop side effects months, or even years, after treatment. These are called late effects. In this information, we use the term late effects to include both long-term and late effects.

Late effects after treatment can include physical changes to the head and neck, such as:

  • a dry mouth and changes in saliva
  • taste changes
  • risk of tooth decay and bone damage in the jaw
  • changes to eating and drinking, such as difficulty swallowing
  • changes in hearing
  • pain or stiffness in the jaw, neck and shoulders
  • changes in how you look

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.

Long-term and late effects

There are different terms used to describe side effects that develop after treatment, 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.

Possible late effects of head and neck cancer treatments

The main treatments for head and neck cancer are surgery, radiotherapy and chemotherapy. You may have had a combination of these. When doctors give chemotherapy and radiotherapy together, it is called chemoradiation (chemoradiotherapy).

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.

Many side effects of treatment improve over time. If you have side effects that are not getting better, or if you develop new symptoms, let someone from your cancer specialist team know. They will look at your symptoms and explain if they are likely to be because of treatment. You may need to have tests to find out the cause.

Remember, you can arrange to see your cancer specialist or specialist nurse between clinic appointments. You can also contact your GP at any time.

The most common late effects of treatment for head and neck cancer are:

Treatment can also cause changes in how you think and feel generally. You may feel more tired than usual for several months after treatment. Your sex life may also be affected. These effects often get better over time as you recover.

After treatment, you may have more time to think and reflect on your illness and what you have been through. You may feel a range of emotions, such as a low mood, anger or anxiety. We have more information on coping with your emotions.

One of the biggest fears many people have is whether the cancer will come back. As time goes on, most people become less worried. If you still feel very worried, you can get help from your GP, your head and neck cancer team, a counsellor or a psychologist.

We have more information about worrying about cancer coming back.

The most common question I’m asked is “When will I be able to taste food again?” I try to reassure them that their taste buds could come back. I can taste everything now that I could before.

Murray, hospital buddy for head and neck cancer patients

Who can help you manage late effects?

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. You specialist doctor will see you regularly in out-patient 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 a:

  • restorative dentist – a dentist who designs prostheses (obturators), implants and dentures to help with eating, speech and appearance
  • dental hygienist – someone who teaches you how to keep your mouth clean and prevent tooth decay
  • speech and language therapist (SLT) – 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 – someone who can help you meet your nutritional needs
  • physiotherapist – someone who offers treatments and exercises to help with reduced movement in the jaw, neck or shoulders and encourages safe physical activities
  • occupational therapist – someone who can help with ongoing tiredness (fatigue)
  • lymphoedema specialist – someone who can help manage fluid build-up in the tissues (lymphoedema)
  • psychologist or counsellor – someone who 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.