Head and Neck Cancer Australia
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People with a head and neck cancer often experience side effects, including changes to breathing and speech, swallowing difficulties; and other physical changes.
You may need therapy after surgery to learn how to speak or communicate in other ways. Using a feeding tube may be helpful if you have trouble eating.
Talk to your doctor about any new or worsening symptoms.
Treatment for head and neck cancer is often difficult both physically and emotionally, and it will take some time to recover. Side effects may be temporary, long-lasting or permanent, and some will need ongoing management and treatment.
Your treatment team will explain what to expect and side effects to watch for. Tell them about any side effects you have and ask which health professionals may be able to help you to cope.
Head and neck cancer can be emotionally challenging. Your treatment team can offer support or you may like to talk to a social worker or psychologist or call Cancer Connect on 13 11 20.
Some cancer treatments cause mouth sores, ulcers and saliva changes, which make eating difficult. But there are ways to manage this.
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. Known as xerostomia, this 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, and can increase the risk of tooth decay. Be careful to keep your mouth and teeth clean and have regular dental checks.
Your lips, teeth, tongue and the muscles in your mouth, jaw and throat all work together to help you chew and swallow. Difficulty swallowing (dysphagia) before, during or after treatment is common. This may be because of the cancer or the treatments, and may be short or long term. Swallowing is important to make sure you eat and drink enough. Signs of swallowing difficulties include: taking longer to chew and swallow; taking longer to eat a meal than your family and friends; coughing or choking while eating or drinking; food sticking in your mouth or throat; or pain when swallowing.
This may make chewing and swallowing difficult because tissue has been removed or reconstructed, or because the surgery has caused dry mouth.
This may make swallowing difficult and cause food to go down the wrong way and into the lungs (aspiration). (This is unlikely after a laryngectomy.) Signs of aspiration include: coughing during or after swallowing; increased shortness of breath during or after a meal; and recurrent chest infections. A speech pathologist can check how your swallowing is working and give you strategies to help you eat and drink safely.
This can cause dry mouth, pain, and weaken the muscles and nerves used to swallow. It may be worse if you have chemoradiation (chemotherapy and radiation therapy at the same time).
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.
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.
A feeding tube can help ensure you maintain your weight and energy. 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:
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.
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.
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).
How you talk can be affected by surgery and radiation therapy. This may be because of side effects such as swelling and irritation, because of a tracheostomy or laryngectomy, or because other structures have been removed. You may find it hard to speak clearly or notice your speech is slurred, or your voice may change. The extent of any changes will vary depending on the location of the cancer, how advanced it was, and the treatment you had.
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. The National Relay Service can help you make phone calls.
Some people treated for head and neck cancer need a tracheostomy. This is an alternative airway created in the front of the neck so they can keep breathing freely.
If you have a tracheostomy, 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 will also make it easier for you to cough up mucus after a long operation. The tube is usually removed within one week of surgery once the swelling has gone down. In some cases, a tracheostomy is needed for longer than this. It is sometimes needed during radiation therapy, though 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 the tracheostomy is needed. Initially you may not be able to speak, but you will be supported by your treatment team while you have a tracheostomy in place. The speech pathologist and physiotherapist will play an important role in your care.
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, returning 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.
A tracheostomy is a surgically created hole (stoma) in your windpipe (trachea) that provides another airway for breathing. A tracheostomy tube is inserted through the hole, and it may be temporary or permanent.
A laryngectomy stoma is a permanent opening in your neck that allows you to breathe. It does not require a tube to keep it open, but some people have a laryngectomy tube to stop the hole getting smaller.
Having a tracheostomy or stoma is a big change and takes some getting used to. Your specialist, nurse, physiotherapist or speech pathologist can explain ways to manage the following concerns:
If the larynx (voice box) is removed, there are various ways to speak.
The surgeon makes an opening between your trachea and oesophagus. This is called a 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.
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.
You swallow air and force it up through your oesophagus to produce a lowpitched sound. This method can be difficult, and you will need training.
If lymph nodes have been removed in a neck dissection or damaged by radiation therapy, this 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. You are also more likely to develop lymphoedema if a lot of lymph nodes were removed.
Symptoms of lymphoedema can be easier to manage if the condition is treated early. The main signs of lymphoedema include swelling, redness and skin warmth, which may come and go. Sometimes the swelling develops internally and is hard to see but the area may feel different (e.g. mild tingling). It is important to look out for these signs and to visit your doctor if they appear.
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.
Some hospitals have specialist physiotherapists and occupational therapists who can teach you simple exercises to reduce your risk of developing lymphoedema, or show you ways to manage it if you have it already. There are also private lymphoedema practitioners who can help with prevention and offer treatments such as lymphatic drainage massage, exercises, low-level laser therapy, skin care and compression garments, if needed. To find a lymphoedema practitioner, visit The Australasian Lymphology Association.
Ongoing pain, numbness and restricted movement in the head and neck area can be upsetting and cause low mood, fatigue or reduced appetite. These can all affect your quality of life. Speak to your treatment team about ways to manage pain and regain movement, which may include medicines, positioning for comfort, exercises and other methods.
Your specialist, cancer care coordinator or GP can suggest other health professionals to see, such as a physiotherapist, occupational therapist, speech pathologist, massage therapist, psychologist or pain specialist.
Listen to Cancer Council's podcast episodes on Managing Cancer Pain.
If you have lymph nodes removed from your neck, you may have pain and stiffness in your shoulder, or nerve damage that makes your neck feel tight and numb. This may affect how you are able to move your neck or it may make it hard to lift your arm. Partial nerve damage usually heals within 12 months, and feeling should return for many people. In some cases, issues to do with nerve damage are permanent.
Some swelling, pain and stiffness in the head and neck area is common after surgery or if you have radiation therapy as your main treatment. This gradually improves with time. Sometimes swelling called lymphoedema can last longer.
Not being able to fully open the mouth or jaw is called trismus. It can happen after radiation therapy or surgery, and can affect eating, speech and oral hygiene. It may be temporary or permanent. A speech pathologist or physiotherapist can help improve motion, and you can have medicines to reduce pain.
Some chemotherapy drugs can cause nerve damage that leads to tingling, pain or numbness in the hands and feet. This is known as peripheral neuropathy and may affect walking or balance. It is often temporary but can be permanent.
You may have difficulty feeling things in your hands and feet, or persistent feelings of having cold feet. Let your treatment team know about any tingling, pain or numbness, as there are ways to manage these symptoms.
It is common to feel very tired during or after treatment, and you may lack the energy to carry out day-to-day activities. Fatigue for people with cancer is different from tiredness, as it may not go away with rest or sleep. You may lose interest in things that you usually enjoy doing or feel unable to concentrate on one thing for very long. For some people, fatigue continues for months or years after treatment ends.
My family members don’t really understand what it’s like to have cancer thrown at you, but in my support group, I don’t feel like I have to explain.
Let your treatment team know if you are struggling with fatigue. Sometimes fatigue can be caused by a low red blood cell count or be a side effect of drugs or a sign of depression, which can all be treated. There are often programs available through hospitals and treatment centres to help you manage fatigue. A referral to an occupational therapist can also assist with managing fatigue.
Listen to Listen to Cancer Council's podcast episode Managing Cancer Fatigue.
Various side effects may make eating difficult, which can cause you to lose weight. Even a small drop in your weight (e.g. 3–4 kg), especially over a short period of time, may put you at risk of malnutrition. You can be malnourished even if you are overweight.
Unplanned weight loss and malnutrition can reduce your strength, energy and quality of life. This can affect how you respond to treatment, and side effects may be more severe and your recovery slower. During treatment and recovery, a dietitian can assess whether a feeding tube will help you maintain or gain weight.
Listen to Cancer Council's podcast episode Appetite Loss and Nausea.
Many types of surgery for head and neck cancer will cause temporary or permanent changes to the way you look.
It is common to lose weight during treatment and many people find it hard to put the weight back on.
People who need a feeding tube or tracheostomy tube or who have a stoma following a laryngectomy may feel self-conscious about it.
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.
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. Other people may have a prosthesis (e.g. a nose prosthesis), a soft plastic replacement for the tissue that has been removed. A prosthesis will be specially fitted to blend in well with your own features. If you are likely to need a prosthesis, the surgeon will discuss it with you before the operation.
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.
Surgery or radiation therapy can damage lymph nodes, and cause swelling called lymphoedema.
Head and neck cancer can affect your sex life in emotional and physical ways. Less interest in sex (low libido) is common. Continuing to feel tired after treatment and feeling anxious about cancer returning may also affect your sexual wellbeing. If your appearance has changed, you may grieve for how you used to look or worry about feeling attractive.
Treatment may cause 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. Mouth surgery may reduce feeling in the tongue or lips, but feeling should return in 12–18 months. These changes can make kissing and oral sex difficult, while any altered speech may affect your self-esteem and ability to express yourself during sex.
During chemotherapy, use barrier contraception (e.g. condoms) during sexual intercourse to avoid exposing your partner to chemotherapy risks and to avoid getting pregnant. It is important to discuss this with your doctor to keep your partner safe and to prevent pregnancy.
You or your partner/s may worry about having sex if the cancer was HPV-related. A long-term partner is likely to have already had the virus and cleared it without having symptoms. Their immune system remembers it and stops an infection developing again. Talk to your doctor about the risk of passing on HPV to a new partner.
Some people choose to express their feelings in ways other than sex, 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.
Visit our LGBTQIA+ resources page.
Having treatments to the head, neck and mouth area may affect your sense of taste and smell.
After some surgeries to the nasal cavity, you may lose your sense of smell, and your sense of taste may also be affected. If you have a laryngectomy, air will no longer pass through your nose, which can affect your sense of smell. Surgery to the mouth may also change how food tastes.
Some treatments, especially radiation therapy, can change the way the salivary glands work and affect the flavour of food. Food may taste bitter or metallic, or may not have as much flavour as before.
It is important to try to keep eating well so your body gets enough nourishment to maintain your weight. If you lose most or all of your sense of taste, experiment with different textures and temperatures to make food more enjoyable. You could also focus on other appealing aspects of food, such as the colours and presentation of the meal. Another option is to do something else while eating, such as watching TV or reading a book – this might distract you from the food not tasting like it did before.
It can take several months for your sense of taste and smell to return to normal, and this may affect your appetite. If your sense of smell continues to be affected, a speech pathologist may be able to teach you a technique to help you regain your ability to smell. In some cases, taste changes may be permanent.
Listen to Cancer Council's podcast episode Appetite Loss and Nausea.
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, painted to look like your other 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. The physiotherapist and occupational therapist can assist you to manage any changes to your vision after surgery. 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. The licensing authority may ask for information from your doctor to decide if you are medically fit to drive.
Ask your treatment team whether you are at risk of hearing loss and if you should have your hearing tested after treatment ends.
Some drugs can cause hearing loss. The first sign may be ringing in the ears (tinnitus), so tell your doctors if you notice this.
This can damage the internal structure of the ear, cause fluid build-up behind the eardrums and lead to loss of hearing.
Some surgeries, especially for nasopharyngeal cancer, can cause temporary or permanent hearing loss.
Head and Neck Cancer Australia
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