Head and neck cancers

Cancer that starts in the mouth is known as oral cancer. The mouth is made up of the lips and the oral cavity. The oral cavity includes the:

• gums
• lining of the cheeks and lips
• front two-thirds of the tongue (oral or mobile tongue)
• floor of the mouth (under the tongue at the front of the mouth)
• bony roof of the mouth (hard palate)
• small area behind the wisdom teeth (retromolar trigone).

The area at the back of the mouth is called the oropharynx. It includes the base of the tongue, the tonsils, the uvula and the soft palate, as well as the middle section of the throat. Cancer of the oropharynx is known as oropharyngeal cancer.

The throat, also called the pharynx, is a hollow tube that starts behind the nose and leads to the food pipe (oesophagus) and the windpipe (trachea).

The pharynx has 3 main parts:

• nasopharynx – the upper part behind the nose and above the soft palate; cancer starting in this area is called nasopharyngeal cancer
• oropharynx – the middle part, the area from the soft palate and base of the tongue to the back of the mouth, including the tonsils; cancer starting in this area is called oropharyngeal cancer
• hypopharynx – the lower part, around the voice box (larynx); cancer starting in this area is called hypopharyngeal cancer.

Cancers in the 3 parts of the pharynx behave differently and are treated differently.

The voice box, also called the larynx, is the entry point to the windpipe (trachea). It contains the vocal cords and protects the lungs. Cancer that starts in the larynx is called laryngeal cancer.

The larynx has 3 main parts:

• supraglottis – the area above the vocal cords; includes the epiglottis, a small flap of tissue that covers the larynx when you swallow and prevents food and fluids going into the trachea and lungs
• glottis – the area containing the vocal cords, which vibrate when air passes through them to produce the sound of your voice
• subglottis – the area below the vocal cords leading to the trachea.

The thyroid gland sits in front of the trachea under the voice box. It may be treated by a head and neck doctor, but isn’t covered on these pages. For more information, see our Understanding Thyroid Cancer booklet.

The nasal cavity is the large, hollow space behind the nose. It is separated into 2 main cavities by the nasal septum, a thin wall of bone and cartilage in the centre of the nose.

The paranasal sinuses are small, air-filled spaces in the side walls of the nose. They help to warm and moisten air passing to the lungs. They also influence the sound and tone of your voice. There are 4 pairs of paranasal sinuses:

• maxillary sinuses – under the eyes and in the cheek area
• frontal sinuses – behind the forehead
• ethmoid sinuses – above the nose and between the eyes
• sphenoid sinuses – behind the nose and between the eyes.

Cancer that starts in the upper part of the throat behind the nose is called nasopharyngeal cancer. 

The salivary glands make the watery substance known as saliva. This keeps the mouth moist to help with swallowing and talking, and helps protect the mouth and teeth.

There are 3 pairs of major salivary glands:

• parotid glands – in front of the ears
• submandibular glands – under the lower jaw
• sublingual glands – under the tongue.

There are also hundreds of smaller glands throughout the lining of the mouth, nose and throat. These are known as the minor salivary glands.

Cancers can start in the major or minor salivary glands. When cancer is found in one of the parotid glands, it may have spread from a skin cancer on the head or neck.

Almost 6000 people in Australia are diagnosed with a head and neck cancer each year (excluding skin cancers). This includes about 2100 people with cancer in the mouth or tongue; 1400 with pharyngeal cancer; 570 with laryngeal cancer; 230 with nasal or paranasal sinus cancer; and 360 with salivary gland cancer.

Head and neck cancers are more common after the age of 40. Men are about 3 times more likely than women to develop a head and neck cancer, mainly due to higher smoking and drinking rates. However, the rate of oral cancer in females who don’t smoke tobacco is increasing. Aboriginal and Torres Strait Islander peoples are also at increased risk of developing head and neck cancers.

The main factors that increase the risk of developing the most common head and neck cancers are:

• smoking tobacco (including cigarettes, cigars and pipes)
• drinking alcohol
• having had human papillomavirus (HPV).

If you drink and smoke, your risk is much greater than if you only drink or only smoke.

Other risk factors account for a smaller proportion of head and neck cancers. These risk factors include:

• having persistent sores or red or white patches in the mouth
• chewing tobacco, snuff, betel nut, areca nut, paan or gutka
• breathing in asbestos fibres, wood dust or certain chemicals
• poor dental health
• having a weakened immune system
• having had radiation therapy to the head or neck area in the past
• having too much sun exposure (for lip cancer and skin cancer)
• having a parent, child or sibling with head and neck cancer (possibly because you have similar lifestyle factors)
• inheriting a condition linked to head and neck cancer (e.g. Fanconi anaemia, Li-Fraumeni syndrome)
• having had Epstein-Barr Virus (also called glandular fever).

Talk to your doctor if you are worried about any risk factors.

Human papillomavirus (HPV) and cancer risk

HPV is a group of viruses that affect the surface or lining of parts of the body, including the throat, cervix and skin. It is the most common sexually transmitted infection, and may also be transferred in other ways. About 4 out of 5 people are exposed to HPV in their lifetime and most won’t show symptoms or know they’ve had it.

There are many types of HPV, but only some subtypes are linked to oropharyngeal cancer, which starts in the tonsils and tongue base. This HPV may be spread through oral sex and kissing.

Most HPV infections are cleared by our immune system. In some people, the virus can lie dormant for years and then cause cancer. We still do not understand why this happens. HPV vaccination can protect you against HPV infection. Talk to your doctor about vaccination or if you are worried about HPV.T

Your GP will arrange the first tests to assess your symptoms. If these tests do not rule out cancer, you will usually be referred to a specialist, who will arrange further tests. If head and neck cancer is diagnosed, the specialist will consider treatment options. Often these will be discussed with other health professionals at what is known as a multidisciplinary team (MDT) meeting.

During and after your treatment, you will see a range of health professionals who specialise in different aspects of your care. It’s recommended that complex head and neck cancer is treated in a specialist centre. If you have to travel a long way for treatment, transport and accommodation assistance may be available to you. Call Cancer Council on 13 11 20 for details.

Health professionals you may see

• ENT (ear, nose and throat) specialist – treats disorders of the ear, nose and throat nurse administers drugs and provides care, information and support throughout treatment.
• head and neck surgeon – diagnoses and treats cancers of the head and neck; may be an ENT, general, plastic, or oral and maxillofacial surgeon speech pathologist evaluates and treats communication, voice and swallowing difficulties during and after treatment
• oral (maxillofacial) surgeon – performs surgery and treats disorders of the mouth, face and jaws dietitian helps with nutrition concerns and recommends changes to diet during treatment and recovery
• reconstructive (plastic) surgeon – performs surgery that restores, repairs or reconstructs the body’s appearance and function social worker links you and your family to support services and helps with emotional, practical and financial issues
• dentist – evaluates and treats the teeth, which can be affected by cancer treatment
• oral medicine specialist – evaluates and treats the mouth, face, jaw and salivary glands, which can be affected by cancer treatment
• radiation oncologist – treats cancer by prescribing and overseeing a course of radiation therapy
• medical oncologist – treats cancer with drug therapies such as chemotherapy, targeted therapy and immunotherapy (systemic treatment)
• cancer care coordinator – coordinates your care, liaises with MDT members, and supports you throughout treatment; may be a clinical nurse consultant (CNC) or clinical nurse specialist (CNS)
• nurse – administers drugs and provides care, information and support throughout treatment
• speech pathologist – evaluates and treats communication, voice and swallowing difficulties during and after treatment
• dietitian – helps with nutrition concerns and recommends changes to diet during treatment and recovery
• social worker – links you and your family to support services and helps with emotional,  practical and financial issues
• counsellor, psychologist – help you manage your emotional response to diagnosis and treatment
• physiotherapist, exercise physiologist – help restore movement and mobility; improve fitness and wellbeing; physiotherapists also help with breathing and airway clearance and managing lymphoedema
• occupational therapist – assists in adapting your living and working environment to help you resume usual activities after treatment
• Aboriginal and Torres Strait Islander liaison officer – supports Aboriginal and Torres Strait Islander people and their families during treatment and recovery
• pharmacist – dispenses medicine and gives advice about medicines, doses and possible side effects or interactions with other drugs

Depending on your symptoms, the doctor may examine your mouth, throat, nose, neck, ears and eyes. They may gently press your tongue down to check the mouth or feel the area with a gloved finger. They will feel your neck to check the lymph nodes. For hard-to-see areas, the doctor may use specialised equipment (endoscopy), or suggest a procedure under anaesthetic (microlaryngoscopy) to fully examine the area. They may take a tissue sample to test (biopsy).

An endoscopy (nasendoscopy or flexible laryngoscopy) looks at the nose and throat area using a thin, flexible tube with a light and camera on the end. The doctor sprays a local anaesthetic (which tastes bitter) into one of your nostrils to numb the nose and throat. The tube is then gently passed into the nostril and down your throat to look at your nasal cavity, the different parts of the throat (nasopharynx, oropharynx, hypopharynx) and voice box (larynx). You will be asked to breathe lightly, and to swallow and make sounds. It may feel uncomfortable but shouldn’t hurt.

Images from the camera may be projected onto a screen and the doctor may also take a biopsy. An endoscopy takes a few minutes and is usually done in a doctor’s rooms. If you need a biopsy, it may take longer. You shouldn’t have hot drinks for about 30 minutes afterwards, but can go home straightaway.

A microlaryngoscopy is done in hospital under a general anaesthetic. The doctor will look at your throat and voice box and take a biopsy. They’ll insert a stainless steel instrument called a laryngoscope into your mouth to hold the throat open, and use a telescope or a microscope to examine the throat and voice box. A microlaryngoscopy takes 30–60 minutes and you can go home after recovering from the anaesthetic. Your throat may be sore for a couple of days.

A biopsy is when a doctor removes a sample of cells or tissue from a suspicious sore or lump. A specialist doctor called a pathologist examines the sample under a microscope to see if it contains cancer cells, and may do special tests to help guide treatment. The sample may be taken using local anaesthetic during an endoscopy or under a general anaesthetic during a microlaryngoscopy. A needle can also be used to take a biopsy from lumps in the neck or other hard-to-reach areas. This is called a fine needle biopsy or core biopsy. It is often done using a CT scan or ultrasound to guide the needle to the correct place.

Biopsy results are usually available in about a week. If the cancer can’t be diagnosed from the tissue sample, you may have surgery to remove the mass so it can be checked for signs of cancer.

You will usually have at least one of the imaging tests described below, often before a biopsy is done. These tests give more details about where the cancer is and whether it has spread to other parts of your body.

Ultrasound – An ultrasound is sometimes used, particularly to look at the thyroid, salivary glands and lymph glands in the neck. For this scan, you will lie down and a small device called a transducer is coated with gel and moved over the area. The transducer sends out soundwaves that echo when they meet something dense, like an organ or tumour. A computer creates a picture from these echoes. An ultrasound is painless and takes about 15–20 minutes.

CT scan – A CT (computerised tomography) scan uses x-ray beams to create detailed cross-sectional pictures of the inside of your body. Before the scan, you may have an injection of dye (called contrast) into a vein to make the pictures clearer. The dye may make you feel hot all over and leave a strange taste in your mouth for a few minutes. For the scan, you will need to lie still on a table that moves in and out of the CT scanner, which is large and round like a doughnut. The scan itself takes about 10 minutes.

PET–CT scan – A positron emission tomography (PET) scan combined with a CT scan is a specialised imaging test. The CT helps pinpoint the location of any abnormalities revealed by the PET scan.

You may need to fast or follow a special diet the day before this scan, so that you get the most accurate results. Before the scan, you will be injected with a glucose solution that contains some radioactive material. Cancer cells show up brighter on the scan because they take up more glucose solution than the normal cells do.

Next, you will lie down or sit quietly for about an hour as the glucose spreads through your body. Then you have the PET scan, which will usually take about 30 minutes. The CT scan may be done before the PET scan or at the same time.

MRI scan – An MRI (magnetic resonance imaging) scan uses a powerful magnet and radio waves to create detailed cross-sectional pictures of the inside of your body. Before the scan, a dye may be injected into a vein to help make the pictures clearer. During the scan, you will lie on a table that slides into a large metal tube that is open at both ends.

The noisy, narrow machine makes some people feel anxious or claustrophobic. If you think you may become distressed, mention this beforehand to your doctor or nurse. You may be given medicine to help you relax, and you will usually be offered headphones or earplugs. MRI scans usually take 30–90 minutes.

X-rays – Many people will also have a special x-ray called an orthopantomogram (OPG) to check the jaw and teeth.

The lymph nodes in the neck are often the first place cancer cells spread to. If you have a lump in the neck or an imaging scan has shown a suspicious-looking lymph node, your doctor may recommend doing a fine needle or core biopsy of the lymph nodes. It is often done using an ultrasound or CT scan to guide the needle to the correct place.

Before having scans, tell the doctor if you have any allergies or have had a reaction to dyes during previous scans. You should also let them know if you have diabetes or kidney disease or are pregnant or breastfeeding.

The aim of surgery is to completely remove the cancer and preserve the functions of the head and neck area, such as breathing, swallowing and talking. If you have surgery, the surgeon will cut out the cancer and a margin of healthy tissue, which is checked by a pathologist to make sure all the cancer cells have been removed. Often some lymph nodes will also be removed.

The types of surgery used for the different head and neck cancers are described below.  Thinking about having surgery to your head and neck area can be frightening. Talking to your treatment team can help you understand what will happen. You can also ask to see a social worker or psychologist for emotional support before or after the surgery.

Removing lymph nodes

If the cancer has spread to the lymph nodes in your neck, or it is very likely to spread, your surgeon will probably remove some lymph nodes. This operation is called a neck dissection or lymphadenectomy. Your surgeon will tell you if this is needed and explain the procedure.

Most often, lymph nodes are removed from one side of the neck, but sometimes they need to be removed from both sides. A neck dissection may be the only surgery needed, or it may be part of a longer head and neck operation. The surgeon will make a cut under your jaw and sometimes down the side of your neck. You will often have a small tube (drain) in your neck to remove fluids from the wound for a few days after the surgery. A neck dissection may affect how your shoulder moves and your neck looks after surgery. A physiotherapist can help improve movement and function.

How the surgery is done

Depending on the type of head and neck cancer you have, different surgical methods may be used to remove the cancer. Each method has advantages in particular situations – your doctor will advise which method is most suitable for you.

Your surgical options for head and neck cancers may include:

• endoscopic surgery – the surgeon inserts a rigid instrument with a light and camera through the nose or mouth to see and remove some cancers, particularly cancers from the nose and sinuses
• transoral laser microsurgery (TLM) – a microscope (usually with a laser attached) is used through the mouth to remove cancers, particularly of the larynx and lower throat
• transoral robotic surgery (TORS) – the surgeon uses a 3D telescope and instruments attached to robotic arms to reach the cancer through the mouth; often used for oropharyngeal cancers
• open surgery – the surgeon makes cuts in the skin of the head and neck to remove cancers; used for larger cancers and those in difficult positions. Part of the upper and lower jaw or skull may need to be removed and then replaced or reconstructed.

Minimally invasive surgery such as endoscopic, TLM and TORS may mean less scarring, a shorter hospital stay and faster recovery. However, these types of surgery are not suitable for all cases, and open surgery is often the best option.

Reconstructive surgery

After open surgery, you may need reconstructive surgery to rebuild your tongue, mouth or jaw and help with speech and swallowing, and to improve how the area looks. It is usually part of the operation to remove the cancer, but is sometimes done later.

In reconstructive surgery, a combination of skin, muscle and sometimes bone is used to rebuild the area. This can be taken from another part of the body and is called either a “free flap” or a “regional flap”.

Occasionally synthetic materials such as silicone and titanium are used to re-create bony areas or other structures in the head and neck, such as the palate. This is called a prosthetic.

How long will I stay in hospital?

How long you stay in hospital depends on the type of surgery you have, the area affected, and how well you recover. Surgery to remove some small cancers can often be done as a day procedure. Recovery is usually fast and there are often few long-term side effects. Surgery for more advanced cancers often affects a larger area, can involve reconstructive surgery and may take all day. You may need care in the intensive care unit before being transferred to a general ward, and side effects may be long term or permanent. Once you return home, nurses may be able to visit to provide follow-up care.

Surgery for oral cancer

The type of surgery used depends on the cancer’s size and location. Localised cancers can be treated by removing part of the tongue, mouth or lip. For larger cancers, the surgery will affect a bigger area and you may need reconstructive surgery to continue to chew, swallow or speak.

Some tumours can be removed through the mouth, but you may need open surgery for larger tumours. Different types of oral surgery include:

• glossectomy – removes part or all of the tongue
• mandibulectomy – removes part or all of the lower jaw (mandible)
• maxillectomy – removes part or all of the upper jaw (maxilla).

Surgery for pharyngeal cancer

Pharyngeal cancers are treated differently depending on which part of the pharynx is affected. Surgery can be used for many oropharyngeal and hypopharyngeal cancers. Nasopharyngeal cancers are rarely treated with surgery. They may be treated with chemotherapy (often before radiation therapy), radiation therapy (for early-stage cancers), or chemoradiation.

Small oropharyngeal and hypopharyngeal cancers can often be treated with minimally invasive surgery, which is sometimes followed by radiation therapy with or without chemotherapy. If the cancer is large or advanced and surgery is an option, it is more likely to be open surgery through a cut in the neck. Surgery is often followed with radiation therapy and possibly chemotherapy. If surgery is not possible due to the size or location of the tumour, radiation therapy or chemoradiation is usually given instead.

Different types of pharyngeal surgery include:

• hypopharyngectomy – removes part of the hypopharynx (lower throat)
• pharyngolaryngectomy – removes all of the larynx and part of the pharynx; this surgery is less common and is similar to a total laryngectomy
• oropharyngectomy – a less common surgery that removes some of the oropharynx (the part of the throat behind the mouth).

Surgery for laryngeal cancer

If laryngeal cancer is at an early stage, you may have surgery to remove part of the larynx (partial laryngectomy). The surgery may be minimally invasive or open. Your voice may be hoarse or weak afterwards, and may take up to 6 months to recover. In some cases, the changes to the voice may be permanent.

If the cancer has advanced and chemoradiation isn’t an option, you may need open surgery to remove the larynx (total laryngectomy). This operation removes the whole larynx and separates the windpipe (trachea) from the food pipe (oesophagus). After this surgery, you will breathe through a hole in the front of your neck called a laryngectomy stoma. This is a permanent change and you will no longer be able to breathe through your nose and mouth. Because this surgery removes the voice box, you won’t be able to speak in the same way. These changes can be hard to adjust to. A speech pathologist will teach you new ways to talk and communicate.

If you have a total laryngectomy, part or all of your thyroid gland may be removed (thyroidectomy). The thyroid produces thyroxine (T4), the hormone that controls your metabolism, energy levels and weight, so you may need to take thyroid hormone replacement tablets every day for the rest of your life. Talk to your doctor about this.

Surgery for nasal or paranasal sinus cancer

Your doctor may advise you to have surgery for nasal or paranasal sinus cancer if the tumour isn’t too close to your brain or major blood vessels. The type of surgery will depend on where the tumour is and, if you have paranasal sinus cancer, which sinuses are affected. You will often need to have reconstructive surgery as well.

Nasal and sinus cancers are often close to the eye socket, brain, cheekbones and nose. Your surgeon will talk to you about the most suitable approach and whether any other parts of the head or neck may need to be removed to get the best outcome.

The surgeon will also consider how the operation will affect how you look, and your ability to breathe, speak, chew and swallow.

Different types of surgery for nasal and sinus cancer include:

• maxillectomy – removes part or all of the upper jaw (maxilla); may include the upper teeth, part of the eye socket and/or the nasal cavity
• skull base surgery – also known as a craniofacial resection, this surgery removes part of the nasal cavity or sinuses; often done endoscopically through the nose, but a cut along the side of the nose may be needed; sometimes a neurosurgeon assists with this surgery
• orbital exenteration – removes the eye and may also remove tissue around the eye socket
• rhinectomy – removes part or all of the nose.

If your nose, or a part of it, is removed, you may need to have an artificial nose (prosthesis) or the nose may be reconstructed using tissue from other parts of your body. The process for completing the prosthetic or reconstructed nose may take several months. Your surgeon will give you more information about the process and how long this is likely to take. A prosthetic eye may also be an option.

Surgery for salivary gland cancer

Most salivary gland tumours affect one of the parotid glands, which sit in front of the ears. Surgery to remove part or all of a parotid gland is called a parotidectomy.

The facial nerve runs through the parotid gland. This nerve controls facial expressions and movement of the eyelid and lip. If the facial nerve is damaged during surgery, you may be unable to smile, frown or close your eyes. This is known as facial palsy, and it will usually improve over several months.

In some cases, the facial nerve needs to be cut so the cancer can be removed. This will affect how your face looks and moves. There are various procedures that can help improve this, such as using a nerve from another part of the body (nerve graft).

If the cancer affects a gland under the lower jaw (submandibular gland) or under the tongue (sublingual gland), the gland will be removed, along with some surrounding tissue. Nerves controlling the tongue and lower part of the face may be damaged, which may cause some loss of function (e.g. how you speak, eat or close your mouth).

Side effects of surgery

Most surgeries for head and neck cancer will have some short-term side effects, such as discomfort and a sore throat. Recovery after a larger surgery may be more challenging, especially at first.

Depending on the type of surgery you’ve had, after a period of recovery, you may not have any ongoing issues. However, some people do need to adjust to permanent changes after head and neck surgery. Long-term side effects can include:

• reduced energy levels
• difficulty eating (e.g. chewing or problems with teeth)
• speech changes
• breathing changes
• change in appearance
• changes to intimacy and your sex life
• vision and hearing changes
• pain, numbness, swelling (lymphoedema) or less movement in the area.

Talk to your treatment team about what side effects you can expect. Tell them if you experience any worrying side effects after surgery.

What to expect after surgery

How you will feel after head and neck cancer surgery will vary greatly depending on your age, your general health, the size of the affected area and whether you also have reconstructive surgery. Your surgeon can give you a better idea of what to expect after the operation. The side effects listed below are often temporary.

Pain – You will have some pain and discomfort for several days after surgery, but you will be given pain medicines to manage this. You may take tablets or be given injections, or you may have patient-controlled analgesia (PCA), which delivers a measured dose of pain medicine through a drip when you press a button. You may also have numbness after surgery.

Eating and drinking – You will usually wake up from surgery with a drip in your arm to give you fluids. You usually won’t be allowed to eat or drink for several hours or sometimes days. Depending on the surgery, you may then start with clear liquids, move on to puréed food, and then soft foods.

Drains and catheters – For a few days, you may have tubes at the surgery site to drain fluid from the wound into small containers. You may also have a catheter, a tube from your bladder that drains urine into a bag.

Feeding tube – Eating and drinking may be difficult after some surgeries. A temporary feeding tube may be inserted through your nose into your stomach (nasogastric or NG tube) to allow the surgery area to heal. Another option is a gastrostomy or PEG or RIG tube inserted directly into your stomach. A nutritional formula is then given through these feeding tubes.

Movement – After some surgeries, you may be in bed for a time. A physiotherapist will teach you breathing exercises to help clear your lungs and reduce the risk of a chest infection. As soon as possible, your team will encourage you to sit in a chair and walk around. This will speed up recovery.

Breathing difficulties – If surgery is likely to cause your mouth, tongue or throat to become swollen, your surgeon will talk to you about having a temporary tracheostomy. This is a breathing tube in your neck that helps you to breathe.

Speech changes – Some surgeries may affect your ability to speak clearly, but your team will discuss this with you beforehand. You will usually see a speech pathologist who will help you improve your speech.

Sore throat – It’s common to have a sore throat after mouth or throat surgery, but you will be given medicine to control any pain. You may also have some throat discomfort from the anaesthetic tube for a few days.

Swallowing – Surgery will sometimes change the way you swallow and this can often be difficult at first. A speech pathologist will assess your swallowing and help you regain your ability to swallow.

Download our booklet ‘Understanding Surgery’

This treatment (also called radiotherapy) uses a controlled dose of radiation to kill or damage cancer cells. For head and neck cancer, it is most often given with external beam radiation therapy (EBRT). A technique called intensity modulated radiation therapy (IMRT) targets the radiation precisely to the cancer, which reduces treatment time and causes as little harm as possible to nearby healthy tissue.

Radiation therapy as the main treatment – For some pharyngeal and laryngeal cancers, radiation therapy will be the main treatment. The aim is to destroy the cancer while maintaining normal speech, swallowing and breathing. Sometimes chemotherapy will also be used to help the radiation work better (chemoradiation). Radiation treatment usually is given daily for 7 weeks for mucosal head and neck cancers, but this may vary from person to person.

Radiation therapy after surgery – Radiation therapy is often used after surgery for head and neck cancers. This is known as adjuvant treatment. The aim is to destroy any remaining cancer cells and reduce the chance of the cancer coming back. You will probably start radiation therapy as soon as your wounds have healed and you’ve recovered your strength, which should be within 6 weeks. Adjuvant radiation therapy is sometimes given together with chemotherapy (chemoradiation). This is usually given for about 6–7 weeks, but may vary person to person.

Before radiation therapy, you meet with a radiation oncologist to work out whether radiation therapy is right for you. You will have a planning session with a CT scan to show the exact area that needs the radiation. You will also be fitted for a plastic mask called an immobilisation mask. You will wear this at each treatment session.

External beam radiation therapy

Having radiation therapy – Radiation therapy is carefully planned to make sure enough radiation reaches the cancer, while as little as possible reaches healthy organs and tissues. During treatment sessions, you will lie on a table under a machine called a linear accelerator, which precisely delivers the radiation. The treatment is painless and is usually given Monday to Friday for 6–7 weeks. You usually won’t need to stay in hospital.

Wearing the mask – You wear the plastic mask for 10–20 minutes at each session. It helps you keep still and makes sure the radiation is targeted at the same area at each treatment session. You can see and breathe easily, but it may feel strange and confined at first. Tell the radiation therapists if you have claustrophobia or the mask makes you feel uncomfortable – you can talk to someone or may be offered medicine to help you relax.

Side effects of radiation therapy

Radiation therapy side effects vary depending on the area treated, the number of sessions, and whether it is combined with chemotherapy. Side effects often get worse 1–3 weeks after treatment ends and then start to improve. Some side effects may last longer, be ongoing or appear several months or years later. Some may be permanent. It is important to talk to your treatment team if you have any concerns or questions on how the treatment may affect you. The most common short-term and long-term side effects are listed below.

During or immediately after treatment – Short-term side effects can include fatigue, mouth sores, taste changes, nausea, loss of appetite, mouth infection (oral thrush), dry mouth, thick saliva and phlegm, swallowing difficulties, skin redness, burning and pain in the area treated, breathing difficulties and weight loss.

Ongoing – Longer-term or permanent side effects may include dry mouth, thick saliva, difficulties with swallowing and speech, changes in taste, fatigue, muscle stiffness, neck swelling, appetite and weight loss, mouth infection (oral thrush), hoarseness, dental problems such as tooth decay and gum disease, difficulty opening the mouth, and hair loss.

Aspiration – Some people develop a temporary or ongoing problem where fluid or food enters the windpipe (trachea) while swallowing. This is called aspiration and it can cause coughing, lung infections such as pneumonia and, sometimes, difficulty breathing.

Thyroid damage – If the treatment damages the thyroid, it can cause an underactive thyroid (hypothyroidism). This can be managed with thyroid hormone replacement tablets.

Osteoradionecrosis of the jaw – Radiation therapy can damage blood vessels, reducing the blood supply to the area treated. Occasionally, the bone starts to die, leading to pain, infection and fractures. This is known as osteoradionecrosis, or ORN. About 5–7% of people who have radiation therapy to the head and neck develop ORN of the jaw. It can occur months or years later, most commonly after having dental work such as the removal of teeth, when the bone is unable to heal itself. This is why you will usually see a dentist before your cancer treatment, so any dental issues can be treated before there is a risk of ORN.

It is very important to tell your dentist that you have had radiation therapy before beginning any dental work. Treatment for ORN may include antibiotics, other medicines or surgery. To help the bone heal, you may also have hyperbaric oxygen treatment (breathing in concentrated oxygen in a pressurised chamber).

Download our booklet ‘Understanding Radiation Therapy’

Chemotherapy is the use of drugs to kill or slow the growth of cancer cells. The aim is to destroy cancer cells while causing the least possible damage to healthy cells. You will usually receive chemotherapy by injection into a vein (intravenously), although it is occasionally given as tablets. How often you have chemotherapy sessions will depend on the treatment plan.

Chemotherapy may be given for a range of reasons:

• in combination with radiation therapy (chemoradiation), to increase the effects of radiation
• before surgery or radiation therapy (neoadjuvant chemotherapy), to shrink a tumour
• after surgery (adjuvant chemotherapy), given along with radiation therapy, to help reduce the risk of the cancer returning
• as palliative treatment to help relieve symptoms.

Side effects of chemotherapy

Chemotherapy can affect the healthy cells in the body and cause side effects. Everyone reacts differently to chemotherapy, and effects will vary according to the drugs you are given. Some people may have few side effects, while others have many. Not all chemotherapy causes nausea. Your medical oncologist or nurse will discuss likely side effects, including how these can be prevented or controlled with medicine.

Common side effects can include tiredness and fatigue; nausea and/or vomiting; tingling or numbness in fingers and/or toes (peripheral neuropathy); changes in appetite and loss of taste; diarrhoea or constipation; hair loss; low red blood cell count (anaemia); hearing loss; ringing in the ears (tinnitus); lower levels of white blood cells, which may increase the risk of infection; and mouth sores.

Keep a record of the names and doses of your chemotherapy drugs handy. This will save time if you become ill and need to go to the hospital emergency department.

Download our booklet ‘Understanding Chemotherapy’

Head and neck cancer that has advanced is often treated with other drug therapies that reach cancer cells throughout the body (systemic therapies). This may include targeted therapy and immunotherapy, which work in different ways to chemotherapy. They can be combined with other treatments such as chemotherapy or radiation therapy.

Targeted therapy – Targeted therapy targets specific features of cancer cells to stop the cancer growing and spreading. Each targeted therapy drug works on a particular feature, and the drug will only be given if the cancer cells have that feature. For some head and neck cancers, a targeted therapy drug called cetuximab is occasionally used when people cannot take the standard chemotherapy drug or the cancer is advanced.

Download our fact sheet ‘Understanding Targeted Therapy’

Immunotherapy – Immunotherapy uses the body’s own immune system to fight cancer. The main type of immunotherapy drugs used in Australia are known as checkpoint inhibitors. These drugs help the immune system to recognise and attack cancer cells. Nivolumab and pembrolizumab are some checkpoint inhibitors that may be used to treat some types of advanced head and neck cancer.

Download our fact sheet ‘Understanding immunotherapy’

New targeted therapy and immunotherapy drugs are being studied in clinical trials. Talk with your doctor about the latest developments and whether a clinical trial would be an option for you.

In some cases of very advanced head and neck cancer, the treatment team may talk to you about palliative treatment. This aims to improve your quality of life by managing the symptoms without trying to cure the disease. When used as palliative treatment, radiation therapy and chemotherapy or other drug therapies can help manage pain and other symptoms, and may slow the cancer’s spread.

Download our booklet ‘Understanding Palliative Care’

Download our booklet ‘Living with Advanced Cancer’

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.

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.

Tips for managing fatigue

• Plan your day. Set small manageable goals and rest before you get too tired.
• Keep to a regular schedule if possible. Avoid sleeping in, go to bed at your usual time, and take a short nap if you get tired during the day.
• Don’t expect to be able to do everything you used to be able to right away. Gradually increase the activity you do each day.
• Eat a healthy, well-balanced diet to keep energy levels up.
• Regular light-to-moderate exercise has been shown to reduce fatigue. Even a walk around the block can help. A physiotherapist or exercise physiologist can make an exercise program for you.
• Ask for and accept help with shopping or childcare. Try apps like Gather My Crew.

Download our fact sheet ‘Fatigue and Cancer’

Listen to our podcast episode ‘Managing Cancer Fatigue’

Some cancer treatments cause mouth sores and ulcers and saliva changes, which make eating difficult. But there are ways to manage this.

Mouth sores and ulcers – A common side effect of chemotherapy and radiation therapy, these are called oral mucositis. They form on soft tissue in your mouth and make eating, swallowing and talking hurt. 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 to help with any pain. You may find soft, smooth or cooler foods and nourishing fluids are best. If you can’t eat and drink enough, you may need a feeding tube to support you during treatment and recovery.

Dry mouth and saliva changes – 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 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.

How to relieve mouth problems

Mouth sores and ulcers

• Rinse your mouth often – when you wake up, after you eat, and at bedtime. Ask your doctor or nurse what alcohol-free mouthwash to use. They may suggest a homemade mouthwash or a specific mouthwash to help with mouth ulcers.
• Talk to your doctor and nurse about medicines to relieve pain and help with healing.
• Use a soft toothbrush and replace it often to reduce the risk of infections. Brush gently after meals and before bed. If brushing is too painful, try using a water flosser on a low setting.
• Suck on ice cubes.
• Avoid rough, crunchy or dry foods (e.g. chips, toast), vinegar, spices, salty foods, alcohol, very hot or cold things, and citrus, tangy or tomato-based food or juice.
• Use a lip balm for moist lips.
• Tell your doctor, dietitian or speech pathologist if it is hard for you to swallow.

Dry mouth

• Ask your dentist about an oral care plan and have regular check-ups.
• Carry a water bottle and have regular sips throughout the day.
• Limit alcohol and caffeine (these can be dehydrating) and avoid smoking.
• Chew sugar-free gum to help the flow of saliva.
• Put lanolin on your lips (but avoid products containing petroleum).
• Soften food by dipping it into milk or soup, or moisten it with gravy, sauce, cream or custard.
• Drink fluids with meals to help soften the food and make it easier to swallow.
• Acupuncture may help to improve dry mouth. Talk to your doctor before trying it.
• Use artificial saliva, dry mouth gels or lubricating agents from the chemist. Swirl grapeseed oil in your mouth and then spit it out.

Download our fact sheet ‘Mouth Health and Cancer Treatment’

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.

How to manage taste and smell changes

Taste

• Add extra flavour with herbs if food tastes bland.
• Rinse your mouth before eating to clean any coating from your tongue and help improve taste.
• After each meal, brush your teeth and rinse with the mouthwash recommended by your treatment team.
• If you smoke, try to quit. Smoking reduces appetite and changes the taste of food. Call the Quitline on 13 7848 for support.
• Use a paper or silicone straw so the taste of drinks isn’t as strong. (Metal straws may add a metallic taste.)
• Add more nutrition and energy to your food by using butter or milk.
• Encourage your appetite with aromatic foods.
• If food tastes “off”, freshen your mouth by drinking a fruit or herbal tea, or eating sorbet or soft fruits such as watermelon.
• Ask to see a dietitian for more suggestions.

Smell

• If you lose your sense of smell, take extra care with safety issues. Check the use-by dates of foods, turn off gas appliances properly, and make sure that the smoke detectors in your home are working.
• If food smells bother you, ask your family and friends to cook for you, or try cold meats and salads, and cold desserts and fruit.
• Choose foods that are fresh and full-flavoured.
• If taste and smell changes stop you eating enough, you may lose weight. Use nutritional supplement drinks (e.g. Sustagen, Ensure, Resource) to help maintain your strength and energy. You can find them in many pharmacies and supermarkets.
• You may also want to see a dietitian for help. Some nutritional supplements, such as Resource 2.0, are only available with a dietitian prescription.

Download our booklet ‘Nutrition for People Living with Cancer’

Download our fact sheet ‘Understanding Taste and Smell Changes’

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. wallowing 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.

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 – 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.

Radiation therapy – 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).

Swallowing test

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.

How to eat when swallowing is difficult

• See a speech pathologist for ways to chew and swallow to help reduce discomfort or food going down the wrong way (aspiration). They can show you swallowing and vocal exercises and ways to change your posture that may help. To find a speech pathologist, ask the team at your treatment centre or visit Speech Pathology Australia.
• Continue to eat and drink when possible throughout treatment to keep your swallowing muscles working and reduce the likelihood of long-term problems. Even if you have a feeding tube, eating and drinking small amounts can help with swallow recovery, as long as there is no risk of aspiration.
• Ask your doctor about medicines to relieve any discomfort. Medicines may include mouth rinses.
• A speech pathologist can suggest ways to adjust the consistency of food to make it easier to swallow.
• If it is hard to swallow fluids without choking, a speech pathologist can advise ways to thicken supplement drinks. Thicker fluids are easier to control in your mouth so there is less chance of them going down the wrong way.
• See a dietitian to make sure you are getting enough nutrition and hydration.
• Try the recipes in 2 free online books from Griffith University – From Treatment to Table and Beyond the Blender: Dysphagia Made Easy.

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:

• 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.

Types of feeding tubes

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 (sur

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.

How to prevent unplanned weight loss

• Treat eating and drinking like medicine: something that you have to do to feel better.
• Eat 5–6 small meals a day rather than 3 large ones.
• Keep a selection of snacks and drinks handy for when you feel up to having them. Keep something in your bag, at work or in the car.
• Include high-energy and high-protein foods at every meal or snack. For example, try having
  milk-based drinks rather than water and choose cheese and biscuits instead of eating lollies.
• Try ready-to-use nutritional supplement drinks available from supermarkets and pharmacies (e.g. Sustagen, Ensure, Resource).
• Talk to your doctor, nurse or dietitian if you are losing weight, or if you have discomfort or pain when you are swallowing.

Download our booklet ‘Nutrition for People Living with Cancer’

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 (visit Access Hub).

How to manage speech changes

• 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, phone, text-to-speech apps or notebook to write notes.
• A speech pathologist can improve your speech and offer ways to communicate with family and friends. They may give you some exercises to improve the strength and range of motion of your 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. Ask them not to avoid conversation even if it is difficult. They need to 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.
• See a counsellor or psychologist if you are finding it difficult to cope.

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.

Having a tracheostomy – 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.

Having a laryngectomy – 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.

Types of alternative airways for breathing

Tracheostomy

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.

Laryngectomy stoma

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.

Living with a tracheostomy or stoma

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:

• caring for the tube or stoma – you will be shown 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. Your treating team will recommend which option is best for you
• 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.

Speaking after a laryngectomy

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. 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.

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.

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.

Nerve damage – 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.

Swelling and pain – 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.

Reduced mouth opening – 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.

Download our booklet ‘Understanding Cancer Pain’

Pins and needles or numbness – 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.

Download our fact sheet ‘Understanding Peripheral Neuropathy and Cancer’

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

Weight loss – It is common to lose weight during treatment and many people find it hard to put the weight back on.

Feeding tubes and stomas – People who need a feeding tube or tracheostomy tube or who have a stoma following a laryngectomy may feel self-conscious about it.

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. 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.

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 cause swelling called lymphoedema.

Tips for adjusting to appearance changes

• Try to see yourself as a whole person (body, mind and personality) rather than focusing only on the part of you that has changed.
• Talk about how you are feeling with a family member, friend, social worker, occupational
  therapist or psychologist.
• You can book a Look Good Feel Better workshop. They show you how to use hats, wigs and skin care to boost self-esteem, and are for all genders.
• 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 cope and refer you to support services.
• Give yourself time to get used to any changes. Some may be temporary or improve with time.

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.

Download our booklet ‘Sexuality, Intimacy and Cancer’

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.

Chemotherapy – Some drugs can cause hearing loss. The first sign may be ringing in the ears (tinnitus), so tell your doctors if you notice this.

Radiation therapy – This can damage the internal structure of the ear, cause fluid build-up behind the eardrums and lead to loss of hearing.

Surgery – Some surgeries, especially for nasopharyngeal cancer, can cause temporary or permanent hearing loss.

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.

Preventing and managing lymphoedema

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.

Download our fact sheet ‘Understanding Lymphoedema’

After treatment ends, you will have regular appointments to monitor your health, manage any long-term side effects and check that the cancer hasn’t come back or spread. During these check-ups, you may have blood tests and imaging scans, as well as physical and visual examinations of your head and neck. You will also be able to discuss how you’re feeling and mention any other concerns. You will receive continued support from a speech pathologist, dietitian, occupational therapist, physiotherapist, psychologist and social worker if you need it. You may also be asked to see your dentist regularly.

When a follow-up appointment or test is approaching, many people find that they think more about the cancer and may feel anxious. Talk to your treatment team or call Cancer Council
13 11 20 if you are finding it hard to manage this anxiety. You will usually continue to have check-ups for 5 years, but they will become less frequent if you have no further problems. Between follow-up appointments, let your doctor know immediately of any symptoms or health problems.

For some people, head and neck cancer does come back after treatment, which is known as a recurrence. Sometimes this will be another cancer of the head and neck, but it can also be the original cancer that has spread to another part of the body. This is why it’s important to have check-ups.

If the cancer does come back or you develop a new cancer, it is important that you are reviewed by an experienced multidisciplinary team. The treatments you are offered will vary depending on your previous treatments. Surgery, radiation therapy, chemotherapy and immunotherapy may all be options. Targeted therapy is rarely used. 

If you have continued feelings of sadness, have trouble getting up in the morning or have lost motivation to do things that previously gave you pleasure, you may be experiencing depression. This is quite common among people who have had cancer.

Talk to your GP, because counselling or medication – even for a short time – may help. Some people can get a Medicare rebate for sessions with a psychologist. Cancer Council SA also offers a free counselling service.

For information about coping with depression and anxiety, visit Beyond Blue or call them on
1300 22 4636. For 24-hour crisis support, visit Lifeline or call 13 11 14.