Managing Side Effects of Head and Neck Cancers

Also called oral mucositis, sores and ulcers are a common side effect of chemotherapy and radiation therapy. They form on soft tissue in your mouth and make eating, swallowing and talking painful. They usually go away as you recover from treatment.

Your doctor can give you medicines to reduce the pain when you eat, drink or speak. Some pain medicines can be applied directly to the mouth sores to numb them. You may use more than one type of medicine to control the pain.

Keep your mouth clean during treatment to lessen the risk of infection. Alcohol-free mouthwashes help keep your mouth as clean as possible. Ask your speech pathologist and dietitian what to eat.

Try soft, smooth and cooler foods or nourishing fluids, and avoid acidic or spicy foods. If you can’t eat and drink enough, you may need a temporary feeding tube to support you during treatment and recovery.

Radiation therapy to the head or neck area and surgery that affects the salivary glands can reduce the amount of saliva in your mouth, make your mouth dry or make your saliva thick and sticky. This is known as xerostomia and it is often long-lasting.

Xerostomia can make chewing, swallowing and talking difficult. A dry mouth can also make it harder to keep your teeth and mouth clean, which can increase the risk of tooth decay.

• Surgery to the jaw, mouth or throat areas – this may make chewing and swallowing difficult because tissue has been removed or reconstructed, or because the surgery has caused dry mouth.
• Surgery to the larynx or pharynx – surgery to the larynx or pharynx may cause food to go down the wrong way into the lungs. This is known as aspiration and signs include coughing during or after swallowing, increased shortness of breath during or after a meal and recurrent chest infections.
• Radiation therapy – this can cause dry mouth, pain, and changes to the strength of the muscles and nerves used in swallowing. These effects could be worse if you have chemotherapy at the same time as radiation therapy (chemoradiation).

You may have a test before and after treatment to look at what happens when you swallow. A speech pathologist uses a movie-type x-ray known as a videofluoroscopic swallow study or modified barium swallow study to check that foods and liquids are going down the correct way.

You may also have a test called a fibre-optic endoscopic evaluation of swallowing during a nasendoscopy to see how well you can swallow. The test results will help the treatment team plan how any swallowing issues are treated.

• A speech pathologist can help with ways to chew and swallow food. They may suggest changing the consistency of what you eat to ease any pain, to make it easier to swallow or to avoid food going down the wrong way (aspiration). They can show you swallowing and vocal exercises and ways to change your posture that may also be helpful. To find a speech pathologist, ask the team at your treatment centre or visit Speech Pathology Australia.
• If it’s hard to swallow fluids without choking, a speech pathologist can suggest ways to thicken your supplement drinks. Thicker fluids are easier to control in your mouth, so there is less chance of them going down the wrong way.
• Continue to eat and drink when possible throughout treatment. This will keep your swallowing muscles working and reduce the risk of long-term problems. Even with a feeding tube, eating and drinking small amounts can help with swallow recovery, as long as there is no risk of aspiration.
• Try the recipes in the free online books from Griffith University – From Treatment to Table and Beyond the Blender: Dysphagia Made Easy.
• A dietitian can make sure that you are getting enough nutrition and hydration.
• Ask your doctor about medicines, including mouth rinses, that can relieve pain or discomfort.

As a result of surgery or radiation therapy, you may find eating and swallowing uncomfortable or difficult. A feeding tube may be inserted either before, during, or after your surgery or radiation therapy to help you get the nutrition you need. This tube is usually temporary, but sometimes it is permanent.

It is important to avoid losing a lot of weight during treatment and to have enough kilojoules and fluids. If you can’t swallow medicines, check with your doctor, nurse or pharmacist whether these can also be given through the feeding tube.

Your health care team will explain how to:

• care for the tube to prevent it leaking or becoming blocked
• avoid infections – this may include washing your hands before using the tube, and keeping the tube and your skin dry
• monitor for signs that the tube needs to be replaced
• handle issues such as what to do if the tube falls out – while this is very rare it is important to let your treatment team know immediately if this happens
• ensure the tape is secure, especially after a shower – if it’s not secure, the tube can be accidentally bumped out of place.

If you have a feeding tube, it is still important to brush your teeth and keep your mouth clean even though you are not eating or drinking.

The thought of having a feeding tube can be frightening, and it is common to have a lot of questions. Getting used to a feeding tube takes time. Talking to a dietitian or nurse can help, and a psychologist or counsellor can provide emotional support and suggest ways to cope.

Temporary feeding tube

A thin tube is put into a nostril, then down the throat and oesophagus into the stomach. This is called a nasogastric or NG tube. It is mostly used if you need a feeding tube for a short time (e.g. the days or weeks after surgery when you can’t eat).

A doctor may put in an NG tube during an operation when you are asleep or a nurse or doctor may put in or remove the NG tube while you’re awake. A spray is usually used to numb the area to make it less uncomfortable to insert the tube. You will be given specially prepared liquid nutrition through this tube.

Long-term or permanent feeding tube

A tube is inserted through a hole in your belly into the stomach. This is called a gastrostomy tube. It may be used if you need a feeding tube for a longer time, such as during a recovery period from radiation therapy or after a very big operation.

Depending on the way the tube is inserted, it may be done while you’re awake or under anaesthetic. The tube may be inserted by endoscope (percutaneous endoscopic gastrostomy or PEG tube), using an x-ray (radiologically inserted gastrostomy or RIG tube), or surgically (surgical gastrostomy).

• Talking will take time and practice – it’s natural to feel distressed, frustrated and angry at times. You will need to get used to the way your new voice sounds.
• Try non-verbal ways to communicate – gesture, point, nod, smile, mouth words, write things down or ring a bell to call people.
• Use a computer, tablet, mobile phone or notebook to write and send notes.
• Work with a speech pathologist to improve your speech and learn ways to communicate with family and friends. They may give you some exercises to improve the strength and range of motion of the lips, tongue, jaw and larynx.
• Encourage family and friends to be honest if they don’t understand you and to learn new ways to communicate with you. Ask them not to avoid conversation even if it is difficult at first. They may need to be patient and give you time to respond.
• It can be frustrating and difficult when you can't communicate. It may help to have someone you trust to advocate for you or explain what you're trying to say.
• Speak to a counsellor or psychologist if you are finding it difficult to cope with speech changes.
• The National Relay Service can help you make phone calls.

A small cut in the lower neck allows a tube to be inserted into the windpipe. This can be used for breathing during and after surgery when the mouth or throat becomes swollen.

It is usually removed within one week of surgery once the swelling has gone down. In some cases, a tracheostomy is needed for longer or even during radiation therapy, but this is uncommon.

The thought of a tracheostomy may be confronting and scary – talk to your treatment team about how you are feeling and ask them to explain why it is needed. Initially you may not be able to speak, but you will be supported by your treatment team, especially the speech pathologist and physiotherapist.

Once the tracheostomy tube is removed, the hole in your neck normally closes within days. During this time, your voice may be weak and breathy, but will return to normal when the hole closes.

If you have a total laryngectomy, a permanent stoma or breathing hole will be created in your lower neck at the time of the surgery. This will be discussed with you before surgery so you know exactly what to expect, including how you will speak again.

If you need a permanent stoma, the speech pathologist and nurses will teach you how to look after it. 

If the larynx (voice box) is removed, there are various ways to speak:

• Voice prosthesis speech – the surgeon makes an opening between your trachea and oesophagus (tracheoesophageal fistula or puncture). A small voice prosthesis (or valve) is inserted to direct air from your trachea to the oesophagus. This will allow you to speak clearly in a low-pitched, throaty voice.
• Mechanical speech – a battery-powered device (electrolarynx) is used to create a mechanical voice. The device is held against the neck or cheek or placed inside the mouth. You press a button on the device to make a vibrating sound.
• Oesophageal speech – you swallow air and force it up through your oesophagus to produce a low-pitched sound. This method can be difficult and you will need training.

Having a tracheostomy or stoma is a big change and takes some getting used to. Your specialist, nurse or speech pathologist can explain ways to manage the following concerns:

• caring for the tube or stoma – you will be shown you how to clean and care for the tracheostomy tube or stoma.
• coping with dry air – the air you breathe will be much drier since it no longer passes through your nose and mouth, which normally moistens and warms the air. This can cause irritation, coughing and extra mucus coming out of the tracheostomy tube or stoma. There are products available that cover the stoma or attach to the tracheostomy tube to provide heat and moisture for the windpipe.
• swimming and bathing – you will need to use a special stoma cover to avoid water getting into the windpipe, even in the shower. If you have a laryngectomy stoma, you may not be able to go swimming.

Many types of surgery for head and neck cancer will cause temporary or permanent changes to the way you look. For example:

• Weight loss – it is common to lose weight during treatment and it can be hard to put it back on.
• Feeding tube – people who need a feeding tube or tracheostomy tube may feel self-conscious.
• Scars – improved surgical methods mean that most people won’t have major scarring. Surgeons will try to hide scars in skin creases in the neck or on the face, and the scars usually fade over time. Scars from radiation therapy may change the colour or texture of the skin.
• Face – in some cases, removing the cancer means removing an eye or part of the jaw, nose, ear or skin. Some people have reconstructive surgery using tissue from another part of the body, while others may have a prosthesis.
• Jaw and teeth – for certain cancers, your surgeon will need to cut through your jaw (mandibulotomy) and reconstruct it with a plate. This involves a cut through your chin and lip, and the scars will be noticeable for some time. If you have lost teeth due to cancer treatment, you may be able to have further surgery to replace or reconstruct them.
• Swelling – surgery or radiation therapy can damage lymph nodes, and this can cause swelling known as lymphoedema.

Tips for adjusting to appearance changes

• Talk about how you are feeling with a family member, friend, social worker, occupational therapist or psychologist.
• Ask your treatment team how surgery will affect your appearance and if you will be offered reconstructive surgery or a prosthesis to rebuild parts of your face and neck. Your team can suggest ways to help you cope and refer you to support services.
• Give yourself time to get used to any changes. Some may be temporary or improve with time. 
• Try to see yourself as a whole person (body, mind and personality) rather than focusing only on the part of you that has changed.
• Look Good Feel Better workshops show how to use hats, scarves, make-up and skin care to help boost your self-esteem. 

Head and neck cancer can affect your sex life in both emotional and physical ways. Reduced interest in sex (low libido) is common and if your appearance has changed, you may worry that you are less sexually attractive or you may be grieving the loss of how you used to look.

Treatment for head and neck cancer sometimes causes side effects such as dry mouth, bad breath, thick and sticky saliva, poor tongue and lip movement, facial palsy, scars, or a stiff neck and jaw. These side effects can all make kissing and oral sex difficult or less pleasant.

Surgery to the mouth may reduce feeling in the tongue or lips. This can affect the enjoyment and stimulation from kissing, but feeling should return in 12–18 months. If your speech is altered, this may affect your self‑esteem and ability to express yourself during sex.

You or your partner may be afraid of having sex if the cancer was HPV-related. Talk to your doctors if you are concerned about the risk of passing on HPV to a long-term or new partner.

Some people choose to express their feelings in other ways, such as cuddling, holding hands or touching cheek-to-cheek. You may wish to talk to a psychologist or sexual health professional, by yourself or with a partner, to help you find ways to adapt to any sexual changes.

See Sex, Intimacy and Cancer and LGBTQI+ People and Cancer for more information.

If the cancer is in your eye socket, the surgeon may have to remove your eye (orbital exenteration). The empty eye socket will be replaced by a sphere of tissue from another part of your body. This keeps the structure of the eye socket.

Later you can be fitted for an artificial eye, which is painted to look like your remaining eye and surrounding tissue. The eye is like a large contact lens that fits over the new tissue in the eye socket.

You will still be able to see with your remaining eye, but your depth perception and peripheral vision won’t be as good. You will usually still be able to drive and play sport, but it may take time to get used to the changes.

Before you start driving again, tell your driver licensing authority about the changes in your vision, as there may be restrictions you have to follow.

Some treatments for head and neck cancer can affect your hearing. Certain chemotherapy drugs can cause hearing loss. Sometimes the first sign of this is ringing in the ears (tinnitus), so let your doctors know if you experience this.

Radiation therapy can damage the internal structure of the ear, causing fluid to build up behind the eardrums and leading to loss of hearing. Some surgeries to the head and neck, especially for nasopharyngeal cancer, can cause temporary or permanent hearing loss.

Ask your treatment team whether you are at risk of hearing loss and if you should have your hearing tested after treatment ends.

If lymph nodes have been removed in a neck dissection or damaged by radiation therapy, it may prevent lymph fluid from draining properly. The fluid can build up and cause swelling in the neck, face and throat. This is known as lymphoedema. It can be temporary or permanent and may change your appearance.

People who have had surgery followed by radiation therapy to the neck are more at risk, especially if both sides of the neck are treated, as well as those who have had a lot of lymph nodes removed. Symptoms of lymphoedema are easier to manage if the condition is treated early.

Sometimes the swelling and other signs of lymphoedema can take months or years to develop, although some people who are at risk never develop the condition.