On this page: Mouth problems | Taste, smell and appetite changes | Swallowing difficulties | Breathing changes | Speech changes | Appearance changes | Pain and physical discomfort | Vision changes | Lymphoedema | Key points
Head and neck cancer, and its treatment, can cause temporary or permanent side effects that require ongoing management and rehabilitation.
This page contains information and tips to help you manage side effects, including coping with changes in your eating, breathing, speech, and managing pain. For additional support, information and referral advice call Cancer Council 13 11 20.
Radiation to the head or neck can cause dry mouth (xerostomia). This can make chewing difficult and increase your risk of developing cavities in your teeth, so maintaining good oral hygiene is essential.
Mouth sores are common during chemotherapy and radiotherapy treatment. The sores can form on any soft tissue in your mouth, causing difficulty in eating, talking and swallowing.
Your doctor can give you medicines to reduce the pain when you eat, drink or speak. You may also use pain relief medications that can be applied directly to the mouth sores to numb them.
Your dietitian may assist you with choosing foods to minimise discomfort. You may need to choose softer foods and nourishing fluids. Depending on the severity of your pain, a feeding tube may be needed to meet your nutritional needs.
Surgery to the mouth may reduce sensation in the tongue or lips, which can affect the enjoyment and stimulation from kissing. This feeling should return in 12–18 months. Some side effects (such as dry mouth, bad breath due to changes in oral bacteria, poor tongue and lip movement, scars, or a stiff neck and jaw) can also make kissing difficult.
Some people eventually regain some movement or choose to express their feelings in other ways, such as hugging, holding hands or touching cheek-to-cheek. However, if you or your partner are distressed by these changes, it may help to talk things through with a counsellor.
Some treatments, particularly craniofacial resection and laryngectomy, can affect your sense of taste and smell.
You may never regain your full sense of smell, but a speech pathologist may be able to teach you a new technique. It can take several months for your sense of taste to return to normal, and in the meantime, you may experience changes to your appetite. See the tips below for some ideas on how to manage changes to your taste, smell and appetite.
For further information call Cancer Council 13 11 20 or see our nutrition section.
Many people with head and neck cancer have difficulty swallowing (dysphagia) before, during or after treatment.
Surgery in your jaw, mouth or throat – may affect your ability to swallow because of a dry mouth or because tissue has been removed or reconstructed.
Radiotherapy – can cause dryness, pain, and changes to the strength of the muscles used in swallowing.
A partial laryngectomy – may cause food to go down the wrong way into the lungs (aspirate). This is because the larynx and epiglottis are also important for swallowing; they act like valves and shut off the airway when swallowing so liquid or food doesn’t go into the lungs.
If swallowing is painful, ask your doctor about taking pain relief medications. You may also use other types of soothing agents to prevent your mouth and throat from becoming irritated. Your dietitian can help you to modify your diet to minimise pain. A speech pathologist can assess how you swallow, and suggest changes to your swallowing action to help reduce discomfort or concerns of food going down the wrong way (aspiration).
See the Laryngectomee Association of NSW’s book for swallowing and chewing difficulties at stilltalking.org/#cookbook.
Tube feeding (also called enteral feeding) can help you stay nourished if you are struggling to eat or swallow. You may need tube feeding on either a temporary or long-term basis.
If you have a long-term feeding tube, flexible tubing may protrude 8–10 cm from your abdomen. Your health care team will advise you on how to keep the tube clean to prevent wear, leakage and blockages, and when the tubing needs to be replaced. A dietitian will advise you on a feeding plan to ensure your dietary needs are met.
Many people find that having a feeding tube eases the discomfort of eating and the pressure of having to eat meals. If medications can’t be swallowed, these can also be given through the feeding tube. However, having a feeding tube inserted is a significant change, and it is common to feel upset about it. Talking to your family, a counsellor, dietitian or nurse may help you adjust to the change.
The side effects outlined above may cause you to lose weight. Even a small drop in your weight (e.g. 3–4kgs) may put you at risk of malnutrition. You may be malnourished even if you are overweight.
Significant weight loss and malnutrition can lead to reduced energy and strength, and lower quality of life. Your response to treatment may be reduced and side effects can become more severe.
If breathing is difficult, the surgeon will perform a tracheostomy. An artificial opening (stoma) through the neck into the windpipe (trachea) will be created, which allows you to breathe.
After most types of surgery, you will have a temporary stoma. If you have a total laryngectomy, you will have a permanent stoma. If you are having another surgical procedure, the tracheostomy is usually done at the same time under general anaesthetic.
If you have a tracheostomy tube, your trachea is still connected with your upper airway. A plastic outer tube is inserted in the hole to keep it from closing. An inner tube can be removed for cleaning.
Some patients who have a small tube or a tube with a hole (fenestrated tracheostomy tube) will be able to speak straight away. However, in most cases, you will not be able to speak at first, because air will not pass up through the tube into the larynx and mouth. Your speech pathologist will teach you how to speak.
After a recovery period, the tracheostomy tube will probably be removed and the stoma will close up. At first your voice may be weak and breathy, but it should return to normal once the stoma has healed. Your physiotherapist will teach you breathing exercises and airway clearance techniques to make breathing easier.
Occasionally, people need a tracheostomy tube for several weeks during radiotherapy or on a permanent basis. Your health care team will discuss this with you if needed.
The tubes can block without regular cleaning and suctioning. Your health care team will show you how to keep the tubes clean. They will also advise what products to use to keep your airway warm and moist.
People who have a total laryngectomy breathe through a permanent stoma. During the laryngectomy, the trachea is stitched permanently to an opening at the front of the neck and is no longer connected to the mouth and nose in the upper airway.
You may have a tube inserted into the stoma immediately after the surgery. This ensures the stoma stays the same size and keeps your airway open for breathing while you are healing. Your nurses will teach you and your carers how to clean the tube. You will probably be able to remove the tube during the day. Eventually, you may not need it at all. Your speech pathologist or nurse will show you products that cover the stoma but still enable you to breathe while providing heat and moisture for the trachea.
Feeling self-conscious about the way the stoma makes you look and speak is not unusual. Addressing your concerns may help you come to terms with the change.
For more information about stomas, see the Laryngectomee Association of NSW’s booklet You Can Say That Again, available from Cancer Council 13 11 20.
You will no longer be able to hold your breath if you have a permanent stoma. Water sports are not recommended because water can get into your lungs and cause drowning.
If you lose your voice or your ability to speak clearly, it is natural to feel distressed, frustrated and angry at times.
People around you may need to learn new ways to communicate with you and take time to listen carefully. If your voice or speech has changed, some people might pretend to understand what you’re saying so they don’t upset you, or because they’re embarrassed to say they don’t understand. This can be frustrating and you may feel uncomfortable or alienated.
Some people lose the ability to speak clearly or produce voice due to surgery to their mouth or the removal of their larynx. You may find it helpful to:
Three main methods your speech therapist may try after a total laryngectomy are:
Oesophageal speech – You swallow air and force it up through your oesophagus to produce a low-pitched burp. This technique may be difficult and usually requires training.
Mechanical speech – A battery-powered device creates a vibrating sound when it is held against the neck or cheek or placed inside the mouth. You press a button attached to the device when you want to speak.
Tracheoesophageal speech – Your surgeon may create a puncture between your trachea and oesophagus during the laryngectomy or later on. Your surgeon may insert a voice prosthesis (or valve) to direct air from your trachea into the oesophagus. This creates a low-pitch, ‘throaty’ voice.
Talking will take time and practice. You will need to get used to the way your new voice sounds. If you are feeling self-conscious about the change, counselling may help.
You will work with a speech pathologist to improve your speech and learn strategies for communicating with your family and friends. Although this can be challenging, most people who have had surgery are able to learn techniques to talk again. A counsellor or psychologist can help you address any problems or frustrations.
Many types of surgery will change the way you look – this may be temporary or permanent. Today’s surgical techniques mean that scarring is unlikely to be significant for most people. Scars from surgery are often hidden in the neck or in skin creases on the face. They are barely visible and often fade over time.
Face – If part of the jaw, nose or skin is removed, your face will look different. Some people will have a reconstruction with a prosthesis, which is a soft plastic replacement for the tissue that has been removed. A prosthesis is fitted permanently and blends in well with your own features. If you are likely to need a prosthesis, the doctor will discuss this with you before the operation.
Jaw – In some cases, your surgeon will 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 visible for some time.
Neck – After head and neck surgery, you will experience scarring and swelling in the head and neck areas. This swelling can be temporary or permanent and may change your appearance. You may have a hole in your lower neck (stoma) and may also have scarring.
You may be distressed or embarrassed about these changes. Give yourself time to adapt. You may be concerned that if you have surgery or reconstruction to your face, or you have a tracheostomy or feeding tube, this will also change your partner’s attraction to you.
Try to see yourself as a whole person (body, mind and personality) instead of focusing on what has changed. Many people find it helps to talk things through with a counsellor, friend or family member. You can also consult a reconstructive surgeon, who may be able to make physical changes (such as scars) look less obvious, or rebuild parts of your face and neck using tissue from other parts of your body.
Talk to your doctors about how surgery and reconstruction will affect your appearance. You may also like to find out about our upcoming Look Good...Feel Better workshops.
Pain – Pain following surgery or cancer treatment may lead to distress, low mood, fatigue, reduced appetite and reduced quality of life. Speak to your doctor about pain management options. Your physiotherapist may also give you advice on positioning for comfort, make recommendations on exercises or use of other pain relief options such as transcutaneous electrical nerve stimulation (TENS).
Stiff neck and shoulder – If you have lymph nodes removed, you may have stiffness and numbness in your neck, and pain in your shoulder. Neck movement may be restricted, or your shoulder may be dropped or depressed due to nerve injury. Nerve damage usually heals within 4 months, and sensation should return within 12 months. A physiotherapist can assist with reducing pain, and improving posture, movement and function. Your physiotherapist may also suggest using a postural brace for shoulder support.
Lock jaw – Radiotherapy can result in significant reduced opening of the jaws (trismus). Trismus can be temporary or permanent, and may be distressing and painful, and limit or prevent medical examination or treatments requiring access to the oral cavity. Ask for a referral to see a speech pathologist or physiotherapist if you have been diagnosed with trismus by your doctor.
Fatigue, or feeling exhausted and lacking energy for daily activities, is a common physical side effect of cancer treatment. Fatigue can continue for months or, in some cases, years after treatment ends. Call Cancer Council 13 11 20, or ask your GP or occupational therapist for suggestions on how to manage and reduce fatigue.
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. 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 will be poorer. Your changed vision should not prevent you from continuing activities such as driving or playing sport, but it may take time to get used to these changes.
Lymphoedema is swelling that occurs in soft tissue. Swelling usually occurs in a limb such as the arm or leg, but can also occur in the neck after lymph nodes are removed during surgery, or if they are damaged by infection, injury, or other treatment such as radiotherapy. Lymphoedema may be permanent, but it can usually be managed, especially if treated early.
Signs of lymphoedema include persistent swelling, which may be associated with new feelings of throat congestion, heaviness, tightness, aches or pins and needles.
Some hospitals have physiotherapists or occupational therapists specialising in lymphoedema care. They can provide education on prevention and provide a personalised treatment program. This may include lymphatic drainage massage, exercises, skin care and the provision of compression garments if needed.
See Cancer Australia’s booklet Lymphoedema – what you need to know, or call Cancer Council 13 11 20 for more information.