Pain or numbness after head and neck cancer treatment

Head and neck cancer treatment can sometimes cause pain, numbness or other changes in sensation. Radiotherapy to the head and neck often causes a sore mouth. If you develop any of these, it is important to tell your cancer doctor. They can find the cause and give you treatments to help.

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 two years. If the nerve was cut, changes in that area will be permanent.

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. It often improves slowly after treatment ends, but sometimes it is permanent.

If you have nerve pain, doctors can prescribe painkillers or drugs to relieve discomfort.

If you have numbness or a change in sensation in part of your body, take extra care. Sometimes an area that is numb can be injured without you noticing.

Treatments that can help relieve pain include:

  • painkillers
  • physical therapies such as massage, warmth and exercises
  • relaxation.

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. Pain can happen for different reasons. It may be caused by a late effect of treatment such as trismus (jaw stiffness), scar tightness or nerve damage. Sometimes it may be a symptom of cancer coming back.

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.

To help your doctor understand your pain, tell them:

  • where it is
  • how bad it is, using a scale of 0 to 10
  • whether it is constant or comes and goes
  • if anything makes it worse or better
  • how it affects you, for example when you move, eat or sleep
  • if you would describe the pain as aching, burning, dragging, intense, tender or throbbing.


Managing pain

How pain is managed depends on how severe it is and what is causing it. Painkillers are often used to manage it. Other treatments that may help include physical therapies and relaxation therapies.

Painkillers

Some painkillers work well for muscular pain and others work better for nerve pain. Anti-inflammatory drugs help reduce inflammation and swelling. They are good at treating pain in the skin, muscle or bone. They can cause indigestion and may irritate the lining of the stomach, so take them after a meal or snack. If you have had stomach problems, your doctor may advise you not to take them. If muscle spasms are making your pain worse, you may be prescribed a drug to help relax the muscles, such as baclofen (Lioresal®).

Drugs that affect the nervous system, such as gabapentin and amitriptyline, are used to treat nerve pain. The dose is often increased gradually over a few days or weeks. It can take a few weeks for them to take effect.

It is important to take your painkillers regularly, as prescribed by your doctor. This is to maintain a constant level of pain control. People often think they should delay using painkillers for as long as possible. This is not a good idea as it leads to unnecessary pain. It also allows the pain to build up, which can make it harder to control.

Let your doctor know if painkillers are not controlling the pain. Your regular dose may need to be changed or you may need a different painkiller. It sometimes takes time to get the right painkiller and dose to control your pain. You may need a combination of different painkillers to manage your pain. Your doctor can refer you to a specialist pain team if your pain is not well-controlled.

Some painkillers can cause constipation. Constipation means that you are not able to empty your bowels regularly. It can become difficult or painful for you to poo. If the constipation is caused by the painkillers you are taking, it may be possible to change the dose. You may need to take laxatives as well. Your doctor can give you further advice.

Different painkillers are used for mild, moderate and severe pain.

Mild pain

Painkillers used for mild pain include paracetamol and anti-inflammatory drugs, such as ibuprofen (Nurofen® or Brufen®).

Moderate pain

Painkillers used for moderate pain include weak opioid painkillers. These include dihydrocodeine (DF118 Forte® or DHC Continus®), codeine phosphate and tramadol.

Severe pain

Painkillers used for severe pain include strong opioid painkillers, such as morphine, oxycodone, fentanyl or diamorphine.

Physical therapies

If the pain is caused by tightness from scar tissue in the jaw, neck or shoulder, taking painkillers may help. 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, always follow the manufacturer’s safety instructions. Make sure the pack is warm and not hot, especially if there is 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 doctor can refer you for treatment for this. We have more information about lymphoedema.

Relaxation

Feelings like fear, anxiety, depression and tiredness can make pain worse. Learning to relax, even if only for a short time each day, can help you manage and control pain.


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. Your mouth may be more sensitive to spicy, salty, hard or crunchy foods. Alcohol, especially spirits and wine, may also irritate your mouth and make it sore.

If you have a sore mouth, it is still important to continue with regular mouth care. Use a small, soft-bristled toothbrush until your mouth recovers. If toothpaste irritates your mouth, try a flavourless toothpaste. Or try a brand that does not contain sodium lauryl sulphate (SLS) – check the ingredients label.

Always ask your doctor or nurse for advice. They can check for signs of infection and prescribe treatment for you.

Your doctor or dentist can prescribe a mouthwash. This can help prevent or treat a dry mouth, or soreness or ulceration of the lining of the mouth (oral mucositis).

There are also treatments that you can put on the sore area, such as Gelclair® and Episil®. They coat the inside of the mouth and protect sore areas. Your doctor may advise you to use them about an hour before eating.

Your doctor or specialist nurse can advise you on the best painkillers for your situation. You can have liquid painkillers, or painkillers that you can dissolve in water (soluble).

Diluted Difflam® mouthwash can help with pain and swelling in the mouth and throat (pharynx). Using a warm salt water rinse can also help. To make the rinse, boil 900ml of water. Let it cool to a warm temperature and then add 1 teaspoon of salt. Rinse the salt water gently around your mouth. Then spit it out and rinse your mouth with cold or warm water. Try to do this at least four times a day. You should make a fresh rinse each day.


Numbness or changes in sensation

If a nerve was damaged during surgery, this may cause a change in sensation or numbness in that area. It can take up to two years for nerves to heal and normal feeling to return.

For a few people, the only way to remove all the cancer is by cutting the nerve. If this happens, sensation changes to 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.

Peripheral neuropathy

Some chemotherapy drugs can cause changes in sensation to the hands, feet and legs. This is called peripheral neuropathy. It happens when the nerves that carry messages between the brain, the spinal cord and the rest of the body are damaged. Nerve damage causes symptoms such as pins and needles, numbness or pain to the hands and feet.

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 peripheral neuropathy

There is not a drug or treatment that can repair damaged nerves. But nerve pain, sometimes called neuropathic pain, can be treated. Your doctor can prescribe drugs that change nerve impulses, which can help relieve pain. These include anti-depressants, anti-convulsants (used to treat epilepsy) or heart drugs. If your pain is difficult to manage, you can ask your doctor to refer you to a pain clinic for expert help.

If you are having problems with balance or walking because of nerve damage, a physiotherapist can give you treatment and advice. If you are finding it hard to do daily tasks, ask to be referred to an occupational therapist. They can suggest aids and equipment to help.

You may be able to get financial help if:

  • your symptoms continue for more than six months
  • you find walking or daily activities difficult.

Call our cancer support specialists at the Macmillan Support Line on 0800 808 00 00 for more information.

Here are some other things you can do to help yourself:

  • Keep your hands and feet warm – wear gloves and warm socks in cold weather.
  • Avoid walking around barefoot.
  • Check your feet regularly for any problems.
  • Wear well-fitting shoes or boots.
  • Wear gloves when working with your hands – for example when doing household chores, gardening or DIY.
  • Test the temperature of water with your elbow before having a bath or shower, to make sure it is not too hot.
  • Turn the temperature control to a lower setting for hot water or have a temperature control (thermostat) fitted.
  • Keep areas that you walk through free of clutter and well lit.

We have more information on managing cancer pain and peripheral neuropathy.