About late effects

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 than six months or become permanent. These are called long-term effects.

Others may develop side effects months, or even years, after treatment. We call these late effects and this includes any long-term effects too. Not everyone will have late effects.

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

  • a dry mouth
  • changes in saliva
  • effects on the jaw, neck and shoulders
  • changes to eating and drinking, such as difficulty swallowing
  • swelling of the face or neck (lymphoedema)
  • pain or numbness
  • tiredness
  • changes to concentration and memory.

There are things you can do to manage late effects. 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

You may come across different terms to describe side effects that develop after treatment or are still present after treatment is over. There are two commonly used terms:

  • long-term effects
  • late effects.

Long-term effects begin during or shortly after treatment and do not go away in the six months after treatment. They may go away eventually on their own. Symptoms may gradually get better for one or two years, or even longer, after treatment ends. 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.

There are often things that can be done to manage or treat long-term or late effects. Let your cancer doctor or nurse know if side effects you developed during treatment are not going away, or if you develop new symptoms or problems after treatment is over.

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, or chemoradiotherapy.

We have more information about these treatments in our section for head and neck cancers.

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 types of treatment used
  • how much treatment you had
  • whether lymph nodes (lymph glands) in the neck were treated.

Many treatment side effects 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 a result 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 and you can contact your GP at any time.

The most common long-term 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. We have more information about this in our section on tiredness. Your sex life may also be affected. We have more information about this in our section on relationships and sex. These effects often get better over time as you recover and adjust.

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 to help you cope with these kinds of feelings in our section on dealing 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 feel that your worries do not go away with time, you can get help from your GP, your head and neck cancer team, a counsellor or a psychologist. Our section on worrying about cancer coming back has information to help you cope with these feelings.

Who can help you manage late effects

When your treatment is over, it is natural to want to put the cancer behind you. 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. As well as specialist doctors and surgeons, there are other specialists who can help. These may include:

  • restorative dentists, who design prostheses (obturators), implants and dentures to help with eating, speech and appearance
  • dental hygienists, who teach you how to keep your mouth clean and prevent tooth decay
  • speech and language therapists (SLTs), who assess problems with speech, voice and swallowing and teach you how to manage and improve them
  • specialist nurses, who give information and support on managing side effects
  • dietitians, who can help you to meet your nutritional needs
  • physiotherapists, who offer treatments and exercises to help with stiffness in the jaw, neck or shoulders and encourage safe physical activities
  • occupational therapists, who can help with problems with ongoing tiredness (fatigue)
  • lymphoedema specialists, who help manage problems with fluid build-up in the tissues (lymphoedema)
  • psychologists or counsellors, 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 regular mouth, jaw, throat, neck or shoulder exercises. There may be changes in your day-to-day life you need to adjust to.

Dealing with all of this can take a lot of effort and determination. The benefits may not be obvious immediately. It is normal to have difficulties along the way and there may be times when you don’t feel you’re making progress.

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

Sometimes it is easier to talk to someone who is not involved. This could include members of a support group who have been through a similar experience, or a counsellor.

Many centres have health and well-being events for head and neck cancer survivors. These help patients who are dealing with the late effects and emotional needs talked about in this information. Speak to your nurse specialist about what is available in your local treatment or holistic needs 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.