Understanding Head and Neck Cancers A guide for people with cancer, their families and friends
Cancer information
www.cancercouncil.com.au
Understanding Head and Neck Cancers A guide for people with cancer, their families and friends First published July 2008. This edition June 2012. © The Cancer Council NSW 2012 ISBN 978 1 921619 68 7
Understanding Head and Neck Cancers is reviewed approximately every two years. Check the publication date above to ensure this copy of the booklet is up to date. To obtain a more recent copy, phone Cancer Council Helpline 13 11 20. Acknowledgements This edition has been developed by Cancer Council NSW on behalf of all other state and territory Cancer Councils as part of a National Publications Working Group initiative. We thank the reviewers of this booklet: Dr Tim Iseli, ENT Surgeon, Royal Melbourne Hospital; Katrina Blyth, Senior Speech Pathologist, Royal Prince Alfred Hospital, NSW; Dr David Boadle, Staff Specialist, Medical Oncology, Royal Hobart Hospital; Geoffrey Booth, Consumer; Teresa Brown, Team Leader, Royal Brisbane and Women’s Hospital; Marty Doyle, Co-founder and Facilitator, Head and Neck Cancer Support Group, Brisbane; Dr Peter Foltyn, Dental Department, St Vincent’s Hospital, NSW; Noelene Hunt, Consumer; Dr Michael Jackson, Director, Radiation Oncology Department, Prince of Wales Hospital, NSW; Len McDowall, Consumer; and Cancer Council SA Helpline Consultant. The book 100 Questions and Answers About Head and Neck Cancer (E Carper NP, K Hu, MD, E Kuzin, NP; Jones and Bartlett Publishers; 2008) was used as a source for this booklet. We thank the Cancer Institute for their support and acknowledge the NSW Oncology Group (NSWOG) Head & Neck for their clinical review of the original edition of this booklet. We would also like to thank the health professionals and consumers who have worked on the previous edition of this title. Editor: Vivienne O’Callaghan. Designer and illustrator: Luisa Chisari. Printer: SOS Print + Media Group Note to reader Always consult your doctor before beginning any health treatment. This booklet is intended as a general introduction to the topic and should not be seen as a substitute for your doctor’s or other health professional’s advice. However, you may wish to discuss issues raised in this booklet with them. All care is taken to ensure that the information in this booklet is accurate at the time of publication. Cancer Council NSW Cancer Council is the leading cancer charity in NSW. It plays a unique and important role in the fight against cancer through undertaking high-quality research, advocating on cancer issues, providing information and services to the public and people with cancer, and raising funds for cancer programs. This booklet is funded through the generosity of the people of NSW. To make a donation to help defeat cancer, visit Cancer Council’s website at www.cancercouncil.com.au or phone 1300 780 113.
Cancer Council NSW 153 Dowling Street, Woolloomooloo NSW 2011 Cancer Council Helpline 13 11 20 Telephone 02 9334 1900 Facsimile 02 9334 1741 Email feedback@nswcc.org.au Website www.cancercouncil.com.au ABN 51 116 463 846
Introduction This booklet has been prepared to help you understand more about head and neck cancer. Head and neck cancer is a general term for cancers in the mouth, nose and throat areas (upper aerodigestive tract). This booklet covers the main locations of head and neck cancer: mouth, salivary glands, pharynx (throat), larynx (voice box), nasal and paranasal sinuses. For information about other cancers found within the head or neck, such as brain, thyroid, skin or oesophageal cancers, call Cancer Council Helpline. Many people feel understandably shocked and upset when told they have a type of head and neck cancer. We hope this booklet will help you understand how these cancers are diagnosed and treated, and what support services are available. We cannot advise you about the best treatment for you, but we hope this information will answer some of your questions and help you think about other questions to ask your doctors and treatment team. This booklet does not need to be read from cover to cover – just read the parts that are useful to you. You may also like to pass this booklet to your family and friends for their information. Some medical terms that may be unfamiliar are explained in the glossary.
Cancer Council Helpline 13 11 20 can arrange telephone support in different languages for non-English speakers. You can also call the Translating and Interpreting Service (TIS) direct on 13 14 50.
Contents What is cancer?................................................................. 4 The head and neck............................................................ 6 Mouth (oral cavity)................................................................................. 6 Throat (pharynx).................................................................................... 7 Voice box (larynx).................................................................................. 8 Nasal cavity and paranasal sinuses...................................................... 9
Key questions.................................................................. 10 What is head and neck cancer?.......................................................... 10 What cell types are affected?.............................................................. 11 Can head and neck cancer spread?................................................... 11 How common is it?............................................................................. 12 What are the symptoms?.................................................................... 12 What are the causes?.......................................................................... 14
Diagnosis.......................................................................... 16 Physical and visual examinations........................................................ 16 Tissue sampling (biopsy)..................................................................... 18 Imaging tests....................................................................................... 18 Cancer staging.................................................................................... 22 Prognosis............................................................................................ 22 Which health professionals will I see?................................................. 23
Treatment overview......................................................... 27 Surgery............................................................................. 30 Surgery for oral cancer........................................................................ 32 Surgery for salivary gland cancer........................................................ 33 Surgery for pharyngeal cancer............................................................ 34 Surgery for laryngeal cancer............................................................... 34 Surgery for nasal and paranasal sinus cancer.................................... 35 After surgery........................................................................................ 37 Long-term effects of surgery............................................................... 38
Other treatment............................................................... 43 Radiotherapy....................................................................................... 43 Chemotherapy..................................................................................... 46 Palliative treatment.............................................................................. 47
Managing side effects..................................................... 49 Dry mouth............................................................................................ 49 Mouth sores and ulcers....................................................................... 50 Changes in taste, smell and appetite.................................................. 51 Nausea and vomiting .......................................................................... 52 Difficulty swallowing............................................................................ 52 Weight loss.......................................................................................... 53 Tube feeding........................................................................................ 54 Changes to speech............................................................................. 56 Tracheostomy...................................................................................... 58
Making treatment decisions........................................... 62 Talking with doctors............................................................................ 63 A second opinion................................................................................ 63 Taking part in a clinical trial................................................................. 64
Looking after yourself..................................................... 65 Healthy eating..................................................................................... 65 Staying active...................................................................................... 65 Complementary therapies................................................................... 66 Relationships with others.................................................................... 67 Sexuality, intimacy and cancer............................................................ 68 Changing body image......................................................................... 70 Life after treatment.............................................................................. 71
Seeking support.............................................................. 74 Practical and financial help................................................................. 75 Talk to someone who’s been there...................................................... 76
Caring for someone with cancer................................... 77 Useful websites............................................................... 78 Question checklist........................................................... 79 Glossary........................................................................... 80
What is cancer? Cancer is a disease of the cells, which are the body’s basic building blocks. Our bodies constantly make new cells to help us grow, to replace worn-out cells and to heal damaged cells after an injury. Normally cells grow and multiply in an orderly way, but sometimes something goes wrong with this process and cells grow in an uncontrolled way. This uncontrolled growth may result in a lump called a tumour or may develop into abnormal blood cells. A tumour can be benign (not cancer) or malignant (cancer). A benign tumour does not spread to other parts of the body. However, a malignant tumour is made up of cancer cells, which are able to spread. The cancer that first develops in a tissue or organ is called the primary cancer.
How cancer starts Normal cells
Abnormal cells
Cancer in-situ
Angiogenesis
Boundary Lymph vessel Blood vessel
Normal cells
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Abnormal cells
Abnormal cells multiply
Malignant or invasive cancer
When it first develops, a malignant tumour may not have invaded nearby tissue. This is known as a cancer in-situ, carcinoma in-situ or localised cancer. As the tumour grows, it may spread and become what is known as invasive cancer. Cancer cells can spread to other parts of the body by travelling through the bloodstream or the lymphatic system. They may continue to grow into another tumour at this new site. This is called a secondary cancer or metastasis. A metastasis keeps the name of the original cancer. For example, oral cancer that has spread to the lungs is still called oral cancer, even though the person may be experiencing symptoms caused by problems in the lungs.
How cancer spreads Primary cancer Local invasion Angiogenesis – tumours grow their own blood vessels Lymph vessel Metastasis – cells invade other parts of the body via blood vessels and lymph vessels
What is cancer?
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The head and neck Mouth (oral cavity) The mouth includes the lips, gums and tongue. The tongue is the largest organ in the mouth. The muscles of the base of the tongue (tongue base) continue into the upper throat (oropharynx). The roof of the mouth is called the hard palate. Behind the hard palate is the soft palate, which is an arch of muscle going into the throat. The soft palate lifts to close off the passageways to the nose so food does not go through the nose on swallowing. Under the tongue and near the upper back teeth are salivary ducts that release spit (saliva) into the mouth. The ducts are joined to salivary glands where saliva is made. The major glands are in front of the ears, and beneath the jaw and tongue (see diagram on next page). There are hundreds of minor glands in the lining of the mouth.
Oral cavity Uvula (part of the oropharynx)
Hard palate Soft palate Tonsil
Tonsil
Oropharynx
Salivary duct Tongue
Gums Lip
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Throat (pharynx) The pharynx is a tube that runs from the back of the nose to the gullet (oesophagus) and the windpipe (trachea). The pharynx has three parts: the nasopharynx, oropharynx (including the tonsils) and hypopharynx. Only air passes through the nasopharynx as you breathe in and out. Both food and air pass through the oropharynx and hypopharynx. Food is directed into the oesophagus and goes into the stomach, while air goes into the trachea to get to the lungs.
Pharynx Nasal cavity
Nasopharynx
• nasopharynx – cavity behind the nose and above the soft palate
Parotid salivary gland
• oropharynx – area from the soft palate and tongue base to the back of the mouth, including the tonsils
Oropharynx Hypopharynx Larynx Sublingual salivary gland
Oesophagus
Submandibular salivary gland
• hypopharynx – lowest part of the throat, behind the voice box (larynx)
Trachea
The head and neck
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Voice box (larynx) The larynx is a short passageway that connects the lower part of the pharynx (hypopharynx) with the windpipe (trachea). It contains the vocal folds or vocal cords (glottis), which vibrate when air passes through them to produce sound. Above the vocal folds is a small flap of tissue called the epiglottis, which prevents food going into the trachea when you swallow. Below the vocal folds is the subglottis. Under the voice box, in front of the trachea, is the thyroid gland.
Larynx Epiglottis
Larynx Thyroid gland
Vocal cords (glottis)
Subglottis
Trachea
Trachea
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Nasal cavity and paranasal sinuses The nasal cavity is the large, air-filled space behind the nose. The nose and upper respiratory tract warm, moisten and filter the air that you breathe. Paranasal sinuses are air-filled spaces within your skull that help to lighten the weight of your head. They also produce mucus and vibrate sound when you speak or sing. The sinuses are in four locations: frontal, ethmoid, sphenoid and maxillary.
Nasal cavity and sinuses Frontal sinuses
• frontal sinuses –
Ethmoid sinuses
behind the forehead Sphenoid sinuses
• ethmoid sinuses – between the eyes
• sphenoid sinuses – in the middle part towards the base of the skull
Nasal cavity Maxillary sinuses
• maxillary sinuses – Tongue
under the eyes and within the cheek (maxillary) bones
The head and neck
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Key questions Q: What is head and neck cancer? A: Head and neck cancer occurs when malignant tumours
grow in any of the tissue in the head or neck. Not all tumours in the head and neck are malignant, but benign and malignant tumours are treated in a similar way. • Mouth or oral cancer – includes cancer that starts anywhere in the mouth, such as the lips, inside cheeks, the front two-thirds of the tongue and the gums. • Salivary gland cancer – can occur in any of the paired major glands in front of the ears or beneath the jaw or tongue. • Pharyngeal cancer – cancers in the pharynx (throat): nasopharyngeal, oropharyngeal and hypopharyngeal cancers. • Laryngeal cancer – starts in the larynx (voice box). • Nasal cancer or paranasal sinus cancer – includes cancers starting in the nose, nasal cavity or the sinuses.
Other cancers in the head and neck area Cancer can start in the tissue of the brain, eye, oesophagus, thyroid gland, skin and scalp. It can also start in the bone or muscle of the head and
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neck. This is not classified as head and neck cancer. For information about these cancers, call Cancer Council Helpline 13 11 20.
Q: What cell types are affected? A: Most head and neck cancers start in the cells that line
the mouth, nose or throat (squamous cells). This is called squamous cell carcinoma. Some cancers start in glandular cells. Many of these are called adenocarcinomas, but other rarer types occur. Cancers affecting squamous cells and glandular cells also start in other parts of the body.
Q: Can head and neck cancer spread? A: Head and neck cancer can spread beyond the location where
it started. This can happen if the cancer is not found early, if it comes back after treatment, or if treatment doesn’t work. When cancer cells spread, the lymph nodes (lymph glands) are one of the first places they go. The nodes are small, bean-shaped structures, which are part of the lymphatic system. From the lymph nodes, the cancer cells may spread to other organs. If a cancer spreads, it is still called its original name based on where it began. In some people, the primary cancer can’t be found, even after many tests. This is known as cancer of unknown primary (CUP) or cancer of occult primary. If doctors think that the cancer started in the head or neck, they may call it metastatic neck cancer with unknown primary and treat it like a head and neck cancer. For general information about CUP, the Helpline can send you a copy of the booklet Understanding Cancer of Unknown Primary.
Key questions
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Q: How common is it? A: About 4000 people in Australia (70% men and 30% women)
are diagnosed with a type of head and neck cancer each year. This includes about 1100 people diagnosed with an oral cancer (mouth and tongue); 900 with lip cancer; 300 with salivary gland cancer; 700 with pharyngeal cancer; 600 with laryngeal cancer; and 150 with nasal or paranasal sinus cancer.
Q: What are the symptoms? A: There are many possible symptoms of head and neck cancer. Oral cancer
• mouth pain or pain on swallowing • a sore or swelling in your mouth or jaw
that doesn’t go away • white patches (leukoplakia) or red patches (erythroplakia) on your gums, tongue or mouth • changes in speech or difficulty pronouncing words • difficulty chewing or swallowing food • a lump in your neck • loose teeth or dentures that no longer fit
Salivary gland cancer
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• swelling or numbness on one side of the
face or under the jaw • different appearance on each side of the face or neck • difficulty swallowing • drooping or muscle weakness on one side of the face (palsy)
• throat pain • a persistent sore throat or cough • coughing up bloody phlegm • voice changes or hoarseness • dull pain around the breastbone • difficulty swallowing • a lump in the neck • an earache • feeling that your air supply is blocked • numbness of the face
Pharyngeal cancer
• swelling in your neck or throat • a persistent sore throat • a change in the sound of your
Laryngeal cancer
voice, or hoarseness • difficulty swallowing or painful swallowing • a lump in the neck
• decreased sense of smell • a persistent blocked nose, particularly in
Nasal or paranasal sinus cancer
one nostril • nosebleeds • mucus drainage in the back of your nose or throat • frequent headaches or sinus pressure • difficulty swallowing • loose or painful teeth • a lump on/in your face, nose or mouth • numbness of the face or within the mouth • pressure or pain in your ears • a bulging or watery eye, double vision or complete or partial loss of eyesight
Key questions
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Q: What are the causes? A: Smoking is the biggest known risk factor for developing most
types of head and neck cancer, except for salivary gland cancer. Statistics show that smoking and drinking rates are higher in men than in women. This is probably a reason why
Risk
Details
tobacco or marijuana use
Smoking cigarettes or pipes, using chewing tobacco and dipping snuff causes about 85% of head and neck cancers.
alcohol use
A person’s risk increases with the amount of alcohol consumed. Using both tobacco and alcohol further increases the risk.
age
Head and neck cancer is most common in people aged 50 and older.
sex
Men are about three times more likely than women to get head and neck cancer.
race
People from some cultural backgrounds may be more likely to develop certain types of head and neck cancer. For example, people from southern China and South-East Asia may have an increased risk of nasopharyngeal cancer.
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head and neck cancer is more common in men. However, other factors besides smoking can also increase the risk. Having one or more of these risk factors does not mean you will get a head and neck cancer, or that it is definitely the cause of the cancer. Talk to your doctor if you are concerned about any of these risk factors.
Risk
Details
inhalation of certain chemicals or dusts
Breathing in sulphuric acid mist, asbestos fibres, dry-cleaning solvents or certain types of paint or nickel may increase the risk.
sun exposure
Ultraviolet (UV) radiation may cause lip cancer, and is the biggest cause of skin cancer in the head and neck.
white patches or red patches
Having white (leukoplakia) or red (erythroplakia) patches in your mouth may lead to oral cancer.
chewing areca nut (known as betel nut or paan)
Chewing this type of palm tree seed, often wrapped in leaves, may cause oral cancer.
Human papillomavirus (HPV)
HPV may be associated with some cancers of the oropharynx. This may be related to oral sex, which transmits the virus.
Key questions
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Diagnosis If you have symptoms that could be due to a head or neck cancer, your general practitioner (GP) can do initial tests but will then refer you to a specialist for further tests. Depending on your symptoms, you may have one or more of the following tests, which include physical and visual examinations, tissue sampling (biopsy) and imaging tests. You will probably also have blood tests.
Physical and visual examinations Used for all head and neck cancers Your doctor will examine your mouth, tonsils and soft palate (oropharynx), neck, ears and eyes. A spatula may be used to see inside the mouth more clearly. The doctor may also insert a gloved finger into your mouth to feel areas that are difficult to see, and will check your lymph nodes (lymph glands) by gently feeling the sides of your neck. To see other locations, such as the nasopharynx, tongue base and pharynx, the doctor will use viewing equipment (see below). This is because the head and neck cavities are difficult to see. The doctors may take a tissue sample (biopsy) at this time.
Nasendoscopy Used for nasal, pharyngeal and laryngeal cancers A nasendoscopy is an examination of the nose and throat using a flexible fibre-optic tube with a light and camera on the end of it (endoscope). A local anaesthetic spray is squirted gently into the nose to numb the back of your nose and throat. You may find that the spray tastes bitter. 16
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The doctor will insert the endoscope into your nose to look at your nasal cavity, nasopharynx, oropharynx, hypopharynx and larynx. Images from the endoscope may be projected onto a screen. The test is not painful as the tube is soft and flexible. However, it can feel unusual. You will be asked to breathe lightly through your nose and mouth. You may be asked to swallow and to make some vocal noises. The doctor may also take some tissue samples. The test takes 5–15 minutes. Afterwards, you can’t eat or drink for about 30 minutes, but you can go home straightaway.
Laryngoscopy Used for pharyngeal and laryngeal cancers A laryngoscopy is a procedure that allows a doctor to examine your larynx and pharynx, and take a tissue sample from your voice box. A tube with a light and camera on it (laryngoscope) is inserted into your mouth and throat and shows the area on a screen. The procedure is done under a general anaesthetic so that you don’t feel anything. It will take 10–40 minutes, and you can go home when you’ve recovered from the anaesthesia. Afterwards, you may have a sore throat for a couple of days.
A bronchoscopy is similar to a laryngoscopy, but it allows doctors to examine the airways to see if cancer has spread to the lungs. The tube (bronchoscope) is inserted into the lungs via the mouth and throat. It may be done under a local or general anaesthetic.
Diagnosis
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Tissue sampling (biopsy) Used for all head and neck cancers A biopsy is when the doctor removes a small amount of tissue for examination under a microscope. It shows whether cancer cells are present and what type of cancer it is. A biopsy can often be done during a physical or visual examination. You will have either a local or general anaesthetic so that you do not feel the procedure. Biopsy results are usually available in about a week.
If you have a biopsy on a lump in your neck or on a tumour that is difficult to access, it will probably be done with a needle that is guided using an ultrasound (see page 21) or a CT scan (see below).
Imaging tests CT scan Used for all head and neck cancers A computerised tomography (CT) scan is a procedure that uses x-ray beams to take pictures of the body. Before the scan, you may have dye called contrast solution injected into your veins to show the blood vessels and make the pictures clearer. The dye may make you feel flushed or hot for a few minutes. You will lie still on a table that moves slowly through the CT scanner. The scanner is large and round like a doughnut. The CT scan itself takes a few minutes and is painless, but the preparation takes 10–30 minutes. You can go home when the scan is complete. 18
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• Before a CT or MRI scan, you may have a blood test to check that the medical dye is safe for your kidneys.
• Tell the doctor if you are allergic to iodine, seafood or
dyes, as this may prevent you from having the dye injected.
• If you have a reaction during the procedure, such as breathing difficulties, tell your doctor or nurse immediately.
MRI scan Used for many head and neck cancers Magnetic resonance imaging (MRI) uses magnetism and radio waves to build up detailed cross-section pictures of the body. If you have a pacemaker that isn’t compatible with an MRI, or if you have another iron-based metallic object in your body, you can’t have an MRI scan due to the effect of the magnet. As with a CT scan, a dye may be injected into your veins before the scan to make the pictures clearer. The pictures are taken while you lie on a table that slides into a narrow metal cylinder – a large magnet – that is open at both ends. An MRI is painless, but some people find lying in the cylinder too confined and noisy. If you think this will be a problem, let the doctor or nurse know beforehand as they can give you medication to ease this feeling or earplugs to reduce the noise. You can usually have someone in the room for company. The test takes about an hour and you can go home once it’s over. If you’ve had medication, ask someone to drive or accompany you home. Diagnosis
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PET scan Used for many head and neck cancers A positron emission tomography (PET) scan produces a threedimensional colour image that shows where some cancers are in the body. It is sometimes recommended to help diagnose oral, pharyngeal or laryngeal cancer, or to see if the cancer has spread. It is only available at some hospitals. You will be injected in the arm with a radioactive glucose solution that takes 30–90 minutes to go through the body. You will need to lie quietly during this time. You will then be scanned for high levels of radioactive glucose. This shows where cancer cells are in the body, as they take up more glucose than normal cells. You will be asked to not eat for several hours before the scan. You probably won’t have to stay in hospital for the test, but it will take several hours to prepare for and have the scan. Drinking plenty of water afterwards will help flush the radioactive material out of your body.
If you have diabetes, you may need to follow a different procedure for a PET scan, as the test may be affected by the way your body processes sugar. Your blood sugar levels may be checked before the scan. Tell your doctor so the test can be adjusted.
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Ultrasound scan Used for many head and neck cancers An ultrasound is a painless scan that uses soundwaves to create a picture of part of your body. It is sometimes used to diagnose pharyngeal cancer or to see if another type of cancer has spread (metastasised). You will probably have the scan as an outpatient. A gel will be spread over your neck, and a paddle-shaped device called a transducer will be moved over the same area. It creates soundwaves that echo when they meet something dense like an organ or a tumour. These echoes are turned into a picture on a computer, allowing the doctor to see any abnormal areas.
X-rays Used for many head and neck cancers You may need x-rays of your head and neck to check for tumours or damage to the bones. The x-rays are quick and painless. There are different types of x-rays, some of which include: • Orthopantomogram (OPG) – This is used to examine the jaw and teeth of people with mouth cancer. • Chest x-ray – This is sometimes done for people with mouth, pharyngeal or laryngeal cancer to check their general health and see whether the cancer has spread to the lungs. • X-ray of facial bones – If you have a nasal or paranasal sinus cancer, the bones in your face will be checked for signs of cancer spreading. Diagnosis
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Cancer staging If tests show you have cancer, your doctor will give the cancer a stage from 1–4 to indicate how large it is and how far it has spread. Staging helps the doctor work out the best type of treatment. Ask the doctor to explain what your stage of cancer means for you. The staging system used for head and neck cancer is called the TNM system. This system is also commonly used to stage cancers in other parts of the body. TNM system T (Tumour) 1–4
Refers to the size of the primary tumour. The higher the number, the larger the cancer.
N (Nodes) 0–3
Shows whether the cancer has spread to the regional lymph nodes of the neck. No nodes affected is 0; increasing node involvement is 1, 2 or 3.
M (Metastasis) 0–1
Cancer has either spread (metastasised) to other organs (1) or it hasn’t (0).
Prognosis Prognosis means the expected outcome of a disease. You may wish to discuss your prognosis and treatment options with your doctor, but it is not possible for any doctor to predict the exact course of the disease. Test results, the type of cancer you have, the rate and depth of tumour growth, how well you respond to treatment, and other factors such as age, fitness and medical history are all important factors in working out your prognosis. 22
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Rene’s story The first indications of a problem were food getting stuck in my throat and soreness there. Later a lump developed on the right side of my neck. My GP referred me to an ENT specialist. He did a biopsy of the lump on my neck, which showed it was a squamous cell carcinoma. I also had x-rays, a CT scan, and a second biopsy in my throat area. They found a primary oropharyngeal cancer in my tonsil and at the back of my tongue. The lump on my neck was a secondary tumour. In hospital, I had several scans to see whether the cancer had spread beyond my neck.
I had radiotherapy to both sides of my throat, as well as chemotherapy. I had to have my back teeth removed as they were in the path of the radiation. Six months later, I had a neck dissection to remove the lymph nodes on the left side. I now have a dry mouth and difficulty swallowing. Exercises to strengthen my neck muscles have improved my swallowing. I am grateful for the wonderful care I received in hospital during pre/post treatment and the supportive friendships found at my head and neck cancer support group.
Which health professionals will I see? Your GP will arrange the first tests to assess your symptoms. If these tests don’t rule out cancer, you will be referred to a specialist (also called a physician) who will arrange further tests, make a diagnosis and advise you about treatment options. The specialist consults with a team of health professionals involved in your care (multidisciplinary team). The next page lists the people you may see. Diagnosis
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Specialist health professionals ENT specialist
treats disorders of the ear, nose and throat
head and neck surgeon
an ear, nose and throat surgeon or a general surgeon with further training to operate on cancer in the head and neck
oral (maxillofacial) surgeon
has qualifications in medicine, dentistry and surgery, and specialises in surgery to the face and jaws
dentist or oral medicine specialist
evaluates and treats the mouth and teeth
prosthodontist
a dentist who specialises in replacing any missing teeth
Allied health professionals cancer nurse coordinator or clinical nurse consultant
coordinates your care and supports you throughout treatment
dietitian
supports and educates patients about nutrition, diet and tube feeding
audiologist
diagnoses and treats hearing problems
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reconstructive surgeon
restores, repairs or reconstructs the body’s appearance and function using surgery
medical oncologist
prescribes and coordinates the course of chemotherapy
radiation oncologist
prescribes and coordinates the course of radiotherapy
gastroenterologist
specialises in disorders of the digestive system, and inserts a feeding tube if required
ophthalmologist
deals with surgery affecting the eyes
social worker, psychologist and counsellor
link you to support services and help you with any emotional, financial or practical problems
speech pathologist
assesses and helps people with communication and swallowing difficulties using rehabilitation techniques
Diagnosis
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Key points • You will have several tests to diagnose a head and neck cancer. Your GP will do some, but you will be referred to a specialist for others.
• At first, your doctor will
• A tissue sample will be taken to examine the cells under a microscope to see whether cancer is present. A biopsy is either done during a physical or visual examination or under anaesthetic for less accessible areas.
do a physical and visual examination of your oral cavity, neck, ears and eyes. • A range of imaging tests will be done to take different types of pictures of the body. These • You may have a nasendoscopy will show where the cancer to check the tissue in your is located and whether it has nose and throat. A flexible spread from its original site. tube with a camera on it (endoscope) is inserted into your nose, and the images • X-rays show whether the appear on a screen. cancer has spread to the bone.
• A laryngoscopy allows the doctor to examine the larynx and pharynx. It is done while you are under general anaesthetic.
• A bronchoscopy is for examining the airways. It is also done under general anaesthetic.
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• The tests help the doctors to stage the cancer, and work out the best treatment and the expected outcome of the disease (prognosis). Staging indicates how large the cancer is and how far it has spread.
• You will see a range of health professionals but will have one primary physician.
Treatment overview Head and neck cancers are treated differently depending on their location and size. Surgery, radiotherapy or chemotherapy, or a combination of these treatments are used to treat the cancer. Before recommending treatment, doctors determine how easy it is to access a tumour using surgery; the likely success of an operation; and whether surgery will cause major side effects. They weigh up the benefits and impacts of all the treatments, and also consider a person’s general health. Surgery – An advantage of surgery is that after the tissue is
removed, it can be examined under a microscope to make sure all the tumour has been taken out and is surrounded by normal tissue (clear margins). This is done by a pathologist. The tissue can also give information about the stage of the cancer (see page 22), which helps doctors decide on further treatment. Surgery is generally the fastest treatment and can be repeated if the cancer comes back. Recovery usually depends on how large the cancer is when diagnosed. For more information, see pages 30–42. Radiotherapy and chemotherapy – Radiotherapy may be given on its own or after surgery with/without chemotherapy, if the cancer is more likely to recur without these treatments. Usually, a course of radiotherapy can only be given once, and it takes about six weeks to recover. For information about radiotherapy and chemotherapy, see pages 43–48.
Your medical team will help you decide what treatment to have. For information on making treatment decisions, see page 62.
Treatment overview
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How different cancers are treated Oral cancer – Cancers of the oral cavity are commonly treated
with surgery, then radiotherapy if required. Chemotherapy is sometimes used in combination with these treatments. Salivary gland cancer – Surgery is done in most cases. This is
usually followed by radiotherapy. Chemotherapy is not usually given unless the cancer has spread, and it may be offered as palliative treatment (see page 47). Pharyngeal cancer – This is usually treated with surgery or
radiotherapy. If radiotherapy does not destroy all the cancer cells or if the cancer comes back, surgery may be performed. If surgery is done first, radiotherapy may be used afterwards to destroy any remaining cancer cells. Chemotherapy may also be offered, usually with radiotherapy. Laryngeal cancer – Where possible, early laryngeal cancer
is treated with either laser surgery or radiotherapy. For larger cancers, radiotherapy is usually combined with chemotherapy (chemoradiation). For advanced cancer, surgery is only used if the cancer comes back or it’s not all killed by radiotherapy. Chemotherapy may be given first to ease the pressure on a person’s airway while chemoradiation is being planned. Radiotherapy (with or without chemotherapy) will be given after surgery to reduce the chance of the cancer coming back. Nasal or paranasal sinus cancer – These are commonly treated
with surgery, followed by radiotherapy and/or chemotherapy. 28
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Before treatment starts Dental check-ups Head and neck cancer treatment, particularly radiotherapy, can cause dental problems, but these can often be prevented. Before starting cancer treatment you must see a dentist or oral medicine specialist for a thorough oral examination and to get an oral health care plan. The plan outlines if any dentistry work is needed to reduce the chance of future dental problems. A plan also helps you learn good oral health care before, during and after treatment. The dentist will probably recommend that decayed or damaged teeth, and healthy teeth that will be affected by radiotherapy, are taken out. These teeth may be removed during cancer surgery or before radiotherapy. Radiotherapy permanently affects tissue healing in the treatment area. In rare cases, it can cause scarring of the jaw, leading to the bone being exposed in the mouth (osteoradionecrosis or ORN). ORN can cause problems if you later need a tooth extraction or surgery to the mouth or jaw. See page 55 for more information. • Visit a dentist for a check-up and to have any necessary work done before radiotherapy starts.
• Check if you are eligible to receive free or low cost public dental services
provided by state and territory governments to Pensioner Concession Card and Health Care card holders.
• Have regular six-monthly dental appointments after your cancer treatment.
Treatment overview
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Surgery The aim of surgery is to remove cancerous tissue and preserve the functions of the head and neck, such as breathing, swallowing and speech, as much as possible. There are different ways surgeons can operate (see opposite page). The operations for the different head and neck cancers are described on pages 32–36. • The surgeons may only need to cut out a small area, which will include an area of healthy tissue around the tumour called a margin. If the operation is small, the healing is usually fast, with few long-term side effects. • For more advanced cancer, an operation will be more extensive and will cause longer-lasting or permanent side effects. Your doctors will discuss whether surgery is an option for you, and the best type of operation for you. Surgery for early cancers may only take about one hour, but procedures for advanced cancers can take 6–12 hours. Both are usually done under general anaesthetic. The doctors will discuss any short-term or long-term side effects that might occur. This will help you weigh up the advantages and disadvantages. For more information about making treatment decisions, see page 62. If a head and neck cancer has spread to the lymph nodes in your neck, or if there is a chance it will spread, your surgeon will probably remove the nodes. This operation is called a neck dissection or lymphadenectomy. In some cases, this may be the only surgery you have, as the primary cancer will be treated with radiotherapy. 30
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Types of surgeries Laser surgery – This is used for small and easily accessible cancers. An intense beam of light is used as a knife to make cuts in the cancerous tissue. Laser surgery is usually more precise and causes less bleeding than open surgery. Laser surgery is done as a day or overnight procedure. The tumour is examined under a microscope by pathologists to make sure it has all been taken out. If this isn’t the case, you may need to have a second operation.
Open surgery – In open surgery, cuts are made through skin and tissue to access the tumour. Sometimes bone needs to be removed too. Surgery can leave scarring or significant changes to the face, mouth or neck, depending on the location of the tumour.
Reconstructive surgery – If you have surgery for more advanced cancer, you may
have reconstructive surgery at the same time as the main operation or at a later date. Surgeons use skin or tissue from another part of the body, or synthetic material (prosthesis), to rebuild the area. Many head and neck surgeons are experts in reconstructive surgery too, but the operation may be carried out by two teams if the reconstruction is done at the same time.
Endoscopic (keyhole) surgery – This may be an option for certain cancers that can be accessed through the nasal cavity. A thin, flexible tube with a camera and light (endoscope) is inserted into the nose or mouth, like in a nasendoscopy (see page 16). An image is projected onto a screen so the surgeon can see more clearly. Tiny surgical instruments are used directly through the nostrils, and no external cuts need to be made to access the tumour.
Surgery
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Surgery for oral cancer Very early cancers can be treated with simple day surgery to remove part of the tongue or mouth. This will heal without side effects in a few weeks. If the cancer is larger, surgery may be more extensive and may require a reconstruction to help you chew, swallow or speak. You may also need a neck dissection to remove lymph nodes if there is a chance of the cancer spreading. Different types of oral surgery include: • glossectomy – removes part of the tongue • mandibulotomy – cuts through the lower jaw • mandibulectomy – removes part/all of the lower jaw • maxillectomy – removes part/all of the upper jaw (hard palate) • transoral primary tumour resection – removes of the tumour through the mouth.
Tony’s story My dentist suspected I had a tumour in my oral cavity during a check-up for a painful wisdom tooth in my lower left jaw. A biopsy confirmed a squamous cell carcinoma. An x-ray, CT scan, ultrasound and PET scan showed the cancer had spread to my lower left jaw bone and the lymph nodes in my upper left neck.
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I had surgery to remove the tumour, the affected jaw bone and lymph nodes. Later my jaw was reconstructed with bone from my leg. I also had radiotherapy to my lower jaw and neck for six weeks. I recovered well. My only ongoing side effect is a dry mouth.
Surgery for salivary gland cancer Some tumours found in the salivary glands are benign, but surgery is the same as for malignant tumours. Most salivary gland tumours affect the parotid gland, which has two parts. Surgery to remove this gland is called a parotidectomy. Surgeons can often cut inside or under the jaw to reach the area but sometimes they need to cut through the jaw. Reconstructive surgery will restore any removed tissue. The facial nerve, which controls movement and muscle tone in the face, runs through the parotid gland. It may be damaged during surgery or part of it may be removed if the cancer has grown around it. If the facial nerve is affected, the surgeons may be able to rejoin it using a nerve from another part of the body, often the leg (a nerve graft). If successful, this will improve movement and appearance on that side of the face. If the cancer begins under the jaw or tongue, the entire gland will be removed, along with some surrounding tissue. Nerves controlling the tongue and lower part of the face may be damaged, causing some loss of function. If the cancer is in a minor salivary gland, in a paranasal sinus or the larynx, it may be removed with endoscopic surgery.
I was diagnosed with cancer after I felt recurring pain in my front left jaw. I had intrusive surgery, which meant my facial nerve was cut, causing paralysis in my face, but I am Geoff (salivary gland cancer) currently free of the cancer. Surgery
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Surgery for pharyngeal cancer Early pharyngeal cancers may be treated with either surgery or radiotherapy. If you have surgery, the surgeon will cut out the tumour and a margin of tissue, which is checked by a pathologist to make sure all the tumour has come out. If the cancer is large or advanced, the surgery is often combined with radiotherapy and possibly chemotherapy. The surgery is more likely to be extensive and may require reconstruction. Often, lymph nodes will be removed from your neck to prevent the cancer spreading. Different types of pharyngeal surgery include: • pharyngectomy – removes part or all of the pharynx • mandibulotomy – cuts through the lower jaw • mandibulectomy – removes part or all of the lower jaw • maxillectomy – removes part or all of the upper jaw • laryngopharyngectomy – removes part or all of the voice box (larynx) and pharynx.
Surgery for laryngeal cancer If the cancer is at an early stage, you may be offered laser surgery. If any of the margins are not clear, you may have more tissue removed in a second procedure. Your voice will recover over six months. If the cancer has advanced, you may need open surgery. The surgeon will work with a speech pathologist to choose a type of operation that reduces the effect on your voice and ability to swallow. 34
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Different types of laryngeal surgery include: • Total laryngectomy – This removes the larynx and separates the windpipe (trachea) from the oesophagus. Without your vocal cords, you won’t be able to speak naturally after this procedure, but you will work with a speech pathologist to learn ways to communicate. For more information, see page 56–60. • Partial laryngectomy – This takes out part of the larynx. It is a rare operation because laser surgery has become more common. You will keep part of your voice box and be able to speak but after surgery your voice may be horse.
If the thyroid gland is taken out (thyroidectomy) during surgery on the voice box, you will need to take thyroid medication for the rest of your life.
Surgery for nasal and paranasal sinus cancer Your doctor may advise you to have surgery if the tumour isn’t too close to your brain, eyes or major blood vessels. The aim of surgery is to remove all of the tumour and a small area of normal tissue. There are various operations for cancers of the nasal cavity and paranasal sinuses – the type you have depends on the location of the tumour. Surgery for paranasal sinus cancer, in particular, varies, depending on which sinuses are affected. Surgery
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Different types of surgery for nasal cancer include: • maxillectomy – removes part or all of the upper jaw, possibly including upper teeth, part of the eye socket and/or the nasal cavity • craniofacial resection – removes tissue between the eyes, requiring a cut along the side of the nose • lateral rhinotomy – cuts along the edge of the nose to gain access to the nasal cavity and sinuses • orbital exenteration – removes the eye • rhinectomy – removes part or all of the nose • endoscopic sinus surgery – removal of part of the nasal cavity or sinuses through the nostrils, using an endoscope • midface degloving – gaining access to your nasal cavity or sinuses by cutting under the upper lip, which means there will be no scar on the face. Some people also have surgery to remove lymph nodes in the neck (neck dissection or lymphadenectomy). Your surgeons will plan the operation carefully to avoid damaging healthy tissue. You may have a major operation, with cuts along the edge of the nose, or you may have endoscopic surgery or midface degloving so that no cuts are made to the face. The surgeons will consider how the operation will affect your appearance, and your ability to breathe, speak, chew and swallow. If they have to remove part or all of your nose, you may get an artificial nose (prosthesis). This will be synthetic or made of tissue from other parts of your body – see page 40 for more information. 36
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After surgery • Sore throat – After surgery for early cancer, you will have a mild sore throat but can usually go home within 24 hours. After a general anaesthetic, you will probably feel quite groggy and your throat may feel sore for up to 24 hours. You may have tubes at the surgery site to drain excess fluid. • Breathing changes – If your mouth is swollen and breathing is difficult, the surgeon will create a breathing hole in your lower neck (tracheostomy). After most types of surgery, this is temporary. If you have a total laryngectomy, you will have a permanent opening (stoma) so you can breathe. For more details, see page 58. • Dietary changes – You may have a temporary feeding tube inserted through your nasal passageway for a few days or weeks, or, rarely, a permanent feeding tube inserted directly into your stomach. See page 54 for more information. Your team will advise when you can start eating again after surgery. You will usually start with fluids, move on to puréed food, and then try soft foods. • Healing time – This depends on your operation. The surgical wounds may heal by themselves or it may be closed with a row of stitches (sutures).
It was good to be prepared about what all the tubes were and why they were there when I woke up from the Peter (nasopharyngeal cancer) operation. Surgery
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Long-term effects of surgery After surgery for early cancer, there are generally few long-term side effects. After more extensive surgery, many people have to adjust to significant changes. These changes depend on your operation, so talk to your doctor about what to expect. You may also see a speech pathologist and/or dietitian before surgery to discuss these issues. For information about adapting to and managing side effects from all cancer treatments, see pages 49–61.
Changes in taste and smell If you have a craniofacial resection, the nerves from your brain that allow you to smell may be removed. This means you will lose your sense of smell, and your sense of taste will be affected. If you have a laryngectomy, air will no longer pass through your nose, which can affect your sense of smell. A speech pathologist can teach you a new technique for smelling.
Changes in swallowing Surgery may affect your ability to swallow because of a dry mouth or because tissue has been removed or reconstructed in your jaw, mouth or throat. For example, if you have tongue surgery, a flap of skin may be used to reconstruct the tongue. The new tissue has no muscle and you won’t feel any sensation for up to 12 months. You will need to work with a speech pathologist to learn how to use the remaining part of the tongue to swallow and speak. The voice box and epiglottis are also important for swallowing. These structures act like valves and shut off the airway when swallowing so liquid or food doesn’t go into the lungs. After 38
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a partial laryngectomy, these structures are affected, and may cause food to go down the wrong way into the lungs (aspirate). Aspiration is not a concern if you have a total laryngectomy. Your dietitian or speech pathologist will let you know safe ways to eat and drink, which may include chopping up food or blending it into a purée. If surgery is likely to cause difficulties in eating or drinking, you may be given a temporary or permanent feeding tube. See pages 54–55.
Changes in speaking Changes to how clearly you speak and/or the quality of your voice depend on the surgery you’ve had. Many people will need speech therapy – see page 57. • After oral or nasal surgery, speech changes often occur for the same reasons that swallowing is affected, for example because of changes to movement in the tongue or soft palate. • If teeth are removed before or during surgery, they probably won’t be replaced, so talk to your surgeon, oral medicine specialist or dentist about how this might affect your speech. • If part or all of your voice box is removed, you will need speech therapy. After a total laryngectomy, there are different options for regaining one’s voice. • As the facial nerve may be damaged during surgery for salivary gland cancer, this can impact on the lip muscles used in speaking. Surgery
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Changes in breathing If you have a total laryngectomy, the surgeon will create a hole in your neck (stoma) so you can breathe and speak. See page 60.
Changes to appearance Talk to your doctors about how surgery and reconstruction will affect your appearance. Many types of operations will change the way you look – this may be temporary or permanent. Scarring from surgery is usually visible at first, but eventually most scars will fade. Understandably, people may be distressed or embarrassed about these changes. See page 70 for information about body image. Face – If part of the jaw, nose or skin is removed, your face will
look different. Some people will have a reconstruction with a prosthesis, which is a soft plastic replacement for the tissue that has been removed. A prosthesis is fitted permanently and blends in well with your own features. If you are likely to need a prosthesis, the doctor will discuss this with you before the operation. Jaw – In some cases, your surgeon will have 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 visible for some time. Neck – If you have a total laryngectomy, your face will swell
temporarily and the appearance of your neck will change permanently. You will have a hole in your lower neck (stoma) and some scarring. 40
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Changes in vision If the cancer is in your eye socket, the surgeon may have to remove your eye (orbital exenteration). The empty eye socket will be replaced by a sphere of tissue from another part of your body. This keeps the structure of the eye socket. Later you can be fitted for an artificial eye, which is painted to look like your remaining eye. The eye is like a large contact lens that fits over the new tissue in the eye socket. You will still be able to see with your remaining eye, but your depth perception and peripheral vision will be poorer. Your changed vision should not prevent you from continuing activities such as driving or playing sport, but it may take time to get used to – and accommodate – the changes.
Other side effects caused by surgery Stiff neck and shoulder – If you have lymph nodes removed, you may have ongoing stiffness, numbness in your neck, and pain in your shoulder. Any loss of feeling should come back within 12 months. The shoulder nerve is usually not permanently damaged but may take up to four months to recover. It is important that you keep moving your shoulder so it does not stiffen while the nerve is recovering. Removal of the lymph nodes will also cause some scarring on your neck. Fatigue – Common after surgery, fatigue can persist for
several months, depending on the extent of your treatment. Ask your health care team for information and tips on how to reduce it. Surgery
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Key points • The aim of surgery is to remove all cancerous tissue and a rim of normal tissue (margin), while maintaining breathing, swallowing or speaking.
• There are different surgical methods: laser, open and endoscopic surgery.
• For more extensive surgery, reconstructive surgery can also be carried out at the same time as the main operation or at a later stage. This rebuilds or repairs an area of the body that has been damaged.
• Not everyone with a head and neck cancer will have surgery. Many people with advanced cancer will have radiotherapy.
• For cancers that are easily accessed, surgery is more straightforward. Most people recover quickly and manage any side effects well.
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• For cancers that are deeper within the head and neck, surgery may be more invasive and may cause long-term or permanent side effects that require ongoing rehabilitation.
• There are many types of surgery, depending on the part of the head and neck affected.
• Depending on the type of surgery you have, you may be in hospital for 24 hours or up to five weeks. If you have extensive surgery, at first you will have tubes in place to drain excess fluid and, if necessary, to assist with breathing or feeding. As you recover, these will be removed.
• If you need help with breathing, swallowing or speaking, or if you need reconstructive surgery, your treatment team will discuss this with you before surgery and will work with you closely after surgery.
Other treatment Radiotherapy Radiotherapy is the use of high-energy x-rays or electrons to kill or damage cancer cells so they can no longer grow and multiply. It can be used alone or with other treatment. Radiotherapy can be given in different ways, either externally or internally. Before radiotherapy begins, the staff will see you to plan the treatment. You will have scans and you may need to be fitted for a mask to wear so that the same location is treated at each session. You will wear the mask for up to an hour in the planning session, but only for 5–40 minutes during treatment, depending on the location of the cancer. You can see and breathe through the mask. External beam radiation – This is the traditional (conventional)
way radiotherapy is given. This form of treatment is common for oral, salivary gland, laryngeal, pharyngeal, nasal and paranasal sinus cancers. During treatment you will lie on a table while radiation is directed from a machine into your body. Treatment itself is painless and the medical team will try to make you as comfortable as possible. It is usually given daily as outpatient treatment, Monday to Friday, for 6–7 weeks. Many people are able to return to their usual activities 4–5 weeks after treatment ends. Intensity modulated radiation therapy (IMRT) – IMRT is a
type of external radiation. It is more common for cancers of the tongue, larynx and paranasal sinuses. The radiation can be shaped around the tumour, which reduces possible damage to healthy tissue. This means a higher dose can be given than in conventional radiotherapy. You will have treatment for 1–6 weeks.
Other treatment
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Tomotherapy – This is a type of three-dimensional radiotherapy
that allows the radiation beams to be shaped around a tumour more precisely. It is currently only available in Brisbane. Internal radiation – Also known as brachytherapy, this treatment is only occasionally used for oral cancers. Small tubes are inserted into and around the tumour while you are under a general anaesthetic. Radioactive material is then placed in the tubes. Your doctor will give you more information about this treatment.
Radiotherapy side effects Many side effects of radiotherapy are temporary, and they will start to ease 2–3 weeks after treatment. However, some side effects may be present for a longer period of time or permanently. Side effects depend on the location of treatment, how long you have treatment for, and the type of radiotherapy you have. If you have radiotherapy after surgery, it may worsen or intensify the side effects experienced after your operation.
Radiotherapy to the throat area may cause an underactive thyroid. Many people need to take thyroid medication after radiotherapy.
Before radiotherapy it is important to have a dental appointment to check for existing problems with your teeth and to have teeth removed if necessary. This is to reduce the chance of future dental problems. See pages 29 and 55 for more information. 44
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Possible side effects from radiotherapy
• dry mouth • dental problems • thick saliva that feels like mucus
• damage to the jaw bone (osteoradionecrosis)
• difficulty swallowing • blocked or swollen salivary
• muscle weakness in the treatment area
• appetite loss • weight loss • nausea or gagging due to a build-up of phlegm
• an underactive thyroid gland (hypothyroidism)
• skin soreness, redness,
glands
• difficulty opening the mouth fully (trismus)
• changes in sense of taste • hair loss in the treated area (particularly facial hair)
• loss of sweat glands in the treatment area
burning or ulceration
• damage to sight or eye function
• inflammation in the mouth or throat (mucositis)
• thrush (white spots) in the mouth due to less saliva
• hoarseness
• fatigue
For information about coping with some of these side effects, see pages 49–61 and talk to your medical team. You can also call Cancer Council Helpline 13 11 20 for free information on radiotherapy, or you can download it from your local Cancer Council website. The website www.eviq.org.au also has information for head and neck cancer patients about radiotherapy and its side effects.
Other treatment
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Chemotherapy Chemotherapy is the treatment of cancer with anti-cancer (cytotoxic) drugs and newer ‘targeted’ agents. The aim of chemotherapy is to kill cancer cells while doing the least possible damage to healthy cells. It can be given for different reasons: • It is often used with radiotherapy – this is called chemoradiation, where the drug increases the effects of the radiotherapy. • It may be given to try to shrink a tumour before surgery or radiotherapy. This is called neoadjuvant chemotherapy. • Chemotherapy can be given after surgery, along with radiotherapy, to reduce the chances of the cancer coming back. • It can also be given as a palliative treatment for symptom management. This aims to reduce pain or discomfort by stopping the cancer from growing and pressing on nerves and other tissue. See the next page for more information. You will probably receive chemotherapy by injection into a vein (intravenously) at treatment sessions over several weeks.
Chemotherapy side effects There are many possible side effects of chemotherapy, depending on the drugs that you are given. People rarely get all of the potential side effects, many of which are preventable and treatable. Chemoradiation may cause more severe side effects than if you have chemotherapy and radiotherapy separately. See pages 49–61 46
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for ways to manage some of these side effects. You can also talk to your medical team and read the free booklet Understanding Chemotherapy, available from the Helpline. The Cancer Institute’s website, www.eviq.org.au, also has information for head and neck cancer patients about chemotherapy and its side effects. Possible side effects from chemotherapy
• tiredness and lethargy • nausea and vomiting • tingling due to nerve damage • taste changes • poor appetite • diarrhoea • hair loss
• anaemia • hearing loss • an increased risk of infection
• mouth sores • memory problems (chemo brain)
Palliative treatment Palliative treatment helps to improve people’s quality of life by reducing symptoms of cancer without trying to cure the disease. It is not just for end-of-life care and can be used at different stages of cancer. Often treatment is concerned with pain relief and stopping the spread of cancer, but it also involves the management of other physical and emotional symptoms. Treatment may include radiotherapy, chemotherapy or other medications. Call the Helpline for more information about palliative care, advanced cancer and cancer pain.
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Key points • Radiotherapy is a common treatment for head and neck cancer. It uses high-energy x-rays or electrons to kill or damage cancer cells.
• It can be used alone or with
appointment to check for any problems with your teeth and to have teeth removed if necessary. This is to reduce the chance of serious problems with your teeth and jaw occurring in the future.
other treatment.
• Chemotherapy is also used • Radiotherapy can be given externally (external beam radiation or IMRT) or internally (brachytherapy). • Radiotherapy can cause
for head and neck cancer. The aim of chemotherapy is to kill cancer cells using anti-cancer drugs. It can be used before or after surgery or radiotherapy to try to shrink the tumour or reduce the chances of it coming back. It can also be given during radiotherapy.
temporary and permanent side effects. These depend on the location of the treatment, how long you have treatment for and the type • Chemotherapy can cause side of radiotherapy you have. If effects, most of which are you have had surgery prior to temporary. radiotherapy, or you are having chemotherapy at the same • Palliative treatment is given time as radiotherapy, you may to alleviate symptoms, experience more severe side such as pain. It may include effects. radiotherapy, chemotherapy or medications. • Before radiotherapy, it is very important to have a dental
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Managing side effects Head and neck cancer, and its treatment, can cause many side effects that may be temporary or permanent. This chapter lists some possible side effects and ways to manage them. Cancer Council Helpline 13 11 20 has more information about side effects caused by chemotherapy and radiotherapy, ways to cope with changes in your eating, and managing pain.
Dry mouth A dry mouth can make chewing difficult and increases your risk of developing cavities in your teeth, so it’s important to maintain good oral hygiene. • Speak to your dentist about an oral care plan. Regular dentist visits and frequent, correct oral care at home can reduce dental complications.
• Ask your medical team, dentist or pharmacist about using mouth lubricants and mouthwashes. • Cut food into small pieces. • Have frequent sips of fluid with your meals.
• Avoid dry, hard lollies, crisps and biscuits if your mouth is sore as well as dry.
• Avoid fluids that are dehydrating, e.g. alcohol or highly caffeinated drinks.
• Try sugar-free pastilles, mints or jubes to increase saliva.
• If your mouth is not sore, try tangy foods, such as lemons or fruit, to stimulate saliva.
• Make soft, moist meals, e.g. add gravies or sauces, use minced meat, have soups and casseroles, and add custard or cream to desserts.
• Sip water frequently; carry a water bottle with you.
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Mouth sores and ulcers Mouth sores are common during chemotherapy and radiotherapy treatment. The sores, which can form on any soft tissue in your mouth, make it difficult to eat, talk and swallow. If you have mouth sores, your doctor can treat them by giving you medicines that reduce the pain when you eat, drink or speak. You may also use pain-killers that can be applied directly to the mouth sores to numb them.
• Avoid foods that sting your mouth, such as vinegar, spices, salty foods, alcohol, very hot or very cold foods and drinks, and citrus or tomato-based food or juice.
• Drink diluted non-citrus fruit juices, such as pear or mango.
• Avoid dry, rough or crunchy foods such as chips, nuts, crackers or toast.
• Chop or blend food, or add stock, milk, sauce or gravy so it’s easier to swallow.
• Rinse your mouth and throat with warm saltwater or a mix of 1 tsp salt, 1 tsp baking soda and 4 cups of water.
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• Use a straw for drinking if you have mouth ulcers.
• Talk to your doctor about mouthwashes or medication to relieve ulcers or thrush (a white coating in the mouth) and to keep your mouth fresh. Don’t use mouthwashes with alcohol, as they may irritate ulcers.
• Use a soft-bristled toothbrush and gently brush your teeth after meals and before bed. Replace your toothbrush regularly to reduce infections.
• Tell your doctor or dietitian if you have ongoing or severe difficulty swallowing.
Changes in taste, smell and appetite Treatment can affect your sense of taste and smell. It can take several months for your sense of taste to return to normal. You may never regain your full sense of smell. Taste changes may make you lose your appetite, or this can happen as a result of stress. Try to find ways to make mealtimes more appealing.
• Marinate meat, fish, poultry or tofu to add extra flavour.
• Freshen your mouth with sugar-free mints or chewing gum, and brush your teeth after meals.
• If you smoke, try to quit. As well as damaging your health, smoking reduces appetite and changes the taste of food.
• Add lemon, ginger and vinegar to your cooking to stimulate your digestive juices and appetite. These ingredients also help to add flavour to your food.
• Use salt, lemon juice or coffee powder if food is too sweet; try sugar or honey if food tastes metallic or salty.
• You can add flavour to food with spices, garlic, herbs, cheese or bacon.
• Use a drinking straw to bypass your tastebuds.
• Ask your family or friends to prepare meals for you, or try pre-cooked frozen meals if you don’t feel like cooking or eating.
• Eat small meals and snacks throughout the day.
• If you lose your sense of smell, take precautions such as installing smoke detectors in your home and checking the use-by dates of foods because you may not be able to smell smoke or foods that are off.
Managing side effects
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Nausea and vomiting Feeling sick (nausea) and vomiting are common side effects of chemotherapy. Some people feel nauseous before, during or after treatment.
• Eat small meals often – not eating can make nausea worse.
• Try sour or salty foods such as dry savoury biscuits and potato crisps. Sugar-free fizzy drinks are also good.
• Try a small snack such as dry toast if you wake up nauseous.
• Eat cold foods, which may be easier to manage than hot, fried, greasy or spicy foods,
e.g. sandwiches, cold meats, salads and cold milk puddings.
• Eat or drink ginger-based foods, such as candied ginger, lemon and ginger tea, dry ginger ale or ginger beer.
• Talk to your doctor about medication to ease ongoing nausea. If the medication is not helpful, ask your doctor about trying a new type.
Difficulty swallowing Many people with head and neck cancer have trouble swallowing (dysphagia) before or after treatment. Radiotherapy can cause dryness, pain, and changes to the strength of the muscles used in swallowing. Surgery may also reduce your ability to swallow. If swallowing is painful, ask your doctor about taking pain-killers. You may also be able to use other types of soothing agents to prevent your mouth and throat from becoming too irritated. 52
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A speech pathologist can assess how you swallow and suggest changes to your diet and swallowing action to help reduce any discomfort or concerns of food going down the wrong way (aspiration). If these problems persist, you may need tube feeding. See the Laryngectomee Association of NSW’s book for swallowing and chewing difficulties at www.stilltalking.org/#cookbook.
Weight loss The side effects on pages 49–53 may cause you to lose weight because you may find it difficult to eat. It is important to keep your body as well nourished as possible. This is because significant weight loss can lead to reduced energy and strength, and reduced quality of life. It is also important to maintain a good weight during treatment because a change in weight can influence the accuracy of radiotherapy or the dose of chemotherapy.
• Eat small meals frequently. • Try to eat and drink nourishing meals or snacks, e.g. drink milk rather than cordial; eat biscuits rather than lollies.
• To gain weight, add extra ingredients to recipes, such as whey powder to full-cream milk, other dairy
products (sour cream, butter, mayonnaise or cheese), oil, eggs, honey, sugar or golden syrup.
• Ask your dietitian about nutritional supplement drinks, which may help you gain weight.
Managing side effects
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Tube feeding After treatment many people need a temporary feeding tube. In some cases, people experience long-term eating difficulties. For example, they may be at risk of aspirating food or drink into their lungs and need a different way of getting nutrition. Tube feeding (also called enteral feeding) can help you stay well-nourished if you are having difficulties eating. If the treatment team thinks you will need assistance with your nutrition during treatment, they will recommend a feeding tube is placed before treatment. This will be discussed with you.
Temporary nasogastric tube • Temporary feeding tube –
Nasogastric tube
A tube is inserted through your nasal passageway (nasogastric or NG tube). It will usually be used for a few days or weeks.
• Long-term or permanent
Oesophagus
Stomach
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feeding tube – A tube is inserted into your stomach while you are anaesthetised (gastrostomy). This may be referred to as a PEG (percutaneous endoscopic gastrostomy) or a RIG (radiologically inserted gastrostomy) depending on how it is inserted.
If you have a long-term feeding tube, flexible tubing may protrude 8–10 cm from your abdomen. Your health care team will advise you on how to keep the tube clean to prevent wear and leakage, ways to prevent blockages, and when the tubing needs to be replaced. A dietitian will tell you what kind of feeding formula and the amount you need to use. Tube feeding helps control your food intake (nutrition), fluid intake (hydration) and your overall wellbeing. Many people find that having a feeding tube eases the discomfort of eating and the pressure of having to eat meals. If medications can’t be swallowed, these can also be given through the feeding tube. However, having a feeding tube inserted is a significant change, and it is common to feel upset about it. Talking to your family, a counsellor, dietitian or nurse may help you adjust to the change.
Osteoradionecrosis Radiotherapy to the head and neck can affect your teeth and bones, possibly causing osteoradionecrosis (ORN). In most cases, your health care team will include a dentist who will take measures to prevent damage before treatment begins (see page 29).
If you do get ORN, your doctors may treat it with surgery, antibiotics or hyperbaric oxygen treatment. This delivers concentrated oxygen to the bone to help it heal. For this treatment, you will sit or lie in a pressurised chamber while oxygen is pumped in for you to breathe.
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Changes to speech Communication is one of the most important parts of life. Most people take their ability to communicate for granted. If you lose your voice or your ability to speak clearly, it is natural to feel distressed, frustrated and angry at times. People around you may need to learn new ways to communicate with you. It will probably help them to take more time to listen carefully. If your voice or speech has changed, some people might pretend to understand what you’re saying so they don’t upset you or because they’re embarrassed to say they don’t understand. It can be frustrating when people aren’t prepared to take extra time to communicate, and you may feel uncomfortable or alienated. It is important for your family and friends to provide you with understanding, sympathy and support.
Loss of speech Some people lose the ability to speak clearly or produce voice due to surgery to their mouth or the removal of their voice box. Immediately after surgery, you can communicate in other ways. You may find it helpful to: • gesture, point, nod, smile, or mouth words • ring a bell to call people • keep pads of paper and pens handy • write on a whiteboard or point to a board with pictures or words • use a computer, mobile phone or other device to type messages • use the National Relay Service – www.relayservice.com.au • join an online support group such as Cancer Council’s www.cancerconnections.com.au. 56
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You will work with a speech pathologist to improve your speech and teach you strategies for communicating with your family and friends. Although this can be challenging sometimes, most people who have had surgery are able to learn techniques to talk again. A counsellor or social worker can help you address any problems or frustrations.
Having speech therapy If you are learning to talk after a total laryngectomy, there are three main methods your speech pathologist may try with you:
Oesophageal speech – You swallow air and force it up through your oesophagus to produce a voice like a lowpitched burp. Most people find this technique difficult to learn.
Tracheoesophageal speech – Your surgeon may create a puncture between your trachea and oesophagus during the laryngectomy or later on. Your speech pathologist can then fit you with a voice prosthesis (or valve) to direct air from your
trachea into the oesophagus. This creates a low-pitch, ‘throaty’ voice.
Mechanical speech – A battery-powered device (such as an electrolarynx) creates an external vibrating sound when it is held against the neck or cheek or placed inside the mouth. You press a button attached to the device when you want to speak. Whichever method you choose, talking will take time and practice. You will also have to get used to the way your new voice sounds. If you are feeling self-conscious about the change, counselling may help.
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Tracheostomy A tracheostomy is an operation to create an artificial opening (stoma) through the neck into the windpipe (trachea). This opening, which looks like a small hole, allows you to breathe. If you are having another surgical procedure, the tracheostomy is usually done at the same time under general anaesthetic. The stoma may be temporary or permanent, and it may have tubes inserted in it. • When laryngeal or pharyngeal cancer becomes advanced, it can block your airways. You may have a tracheostomy before treatment. • If you are recovering from surgery that has caused a swollen mouth or has interfered with breathing through the upper airways, you will probably have a temporary stoma for a few weeks. • If you have had a total laryngectomy, you will learn how to breathe through a permanent stoma (see page 60).
Tracheostomy tube If you have a tracheostomy tube, your trachea is still connected with your upper airway. A plastic outer tube is inserted in the hole to keep it from closing. An inner tube can be removed for cleaning.
The tubes can block without regular cleaning and suctioning. Your health care team will do this, and they will show you how to keep the tubes clean. They will also advise what products to use to keep your airway warm and moist, which is very important.
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It is unlikely that you will be able to speak at first, because for most patients, air will not pass up through the tube into the voice box and mouth. However, some patients who have a small tube or a tube with a hole (fenestrated tracheostomy tube) will be able to speak. Your nursing staff or speech pathologist will teach you how to achieve voice with these tubes. After a recovery period, the tracheostomy tube will probably be removed and the stoma will close up. At first your voice may be weak and breathy, but it should return to normal once the stoma has healed. Occasionally, people need a tracheostomy tube for several weeks during radiotherapy or on a permanent basis. Your health care team will discuss this with you if needed.
Temporary tracheostomy
Vocal cords
Stoma
Oesophagus Trachea
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Stoma People who have a total laryngectomy breathe through a permanent stoma. During the laryngectomy, the trachea is stitched permanently to an opening at the front of the neck and is no longer connected to the mouth and nose in the upper airway. You may have a tube inserted into the stoma immediately after the surgery. This makes sure the stoma stays the same size and keeps your airway open for breathing while you are healing. Your nurses will teach you and your carers how to clean the tube. You will probably be able to remove the tube during the day, and eventually you probably won’t need it at all. Your speech pathologist or nurse will show you products to cover the stoma and provide heat and moisture for the trachea. Feeling embarrassed or self-conscious about the way the stoma makes you look and speak is not unusual. Addressing concerns may help you come to terms with the change. See page 76 for ways to get support. For more information about stomas, see the Laryngectomee Association of NSW’s booklet You Can Say That Again, available from Cancer Council Helpline 13 11 20 or www.stilltalking.org.
You will no longer be able to hold your breath if you have a permanent stoma. Water sports are not recommended because water can get into your lungs and cause drowning.
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Key points • Many people with a head and neck cancer will experience side effects. Some go away following treatment; others need ongoing management and/or rehabilitation.
• Permanent side effects include changes to swallowing, breathing and speaking. If these occur, you will work with different health professionals, such as a speech pathologist and a dietitian.
• A dry mouth is common due to the salivary glands being damaged or removed. Mouth sores often occur during chemotherapy and radiotherapy. This can make it difficult to eat, drink or speak.
• You may experience changes in taste, smell and appetite. You may also have some nausea, vomiting and weight loss. These problems usually go away within a few months of treatment, although some people lose their sense of smell permanently. • Dental check-ups, particularly before and after radiotherapy, will help reduce the risk of osteoradionecrosis, which affects the tissue in the jaw.
• If you have difficulties eating, you may need to use tube feeding. This may be for a few weeks or it may be long-term.
• Many people need speech pathology for various reasons, such as loss of the voice box, loss of muscle movement in the tongue or jaw, or the removal of structures in the mouth. Most people are able to re-learn how to speak and/or communicate in other ways.
• If you need assistance with breathing, you will have a tracheostomy so you can breathe through a hole in your neck (stoma). This can be a major change but support is available.
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Making treatment decisions Sometimes it is difficult to decide on the right treatment. You may feel that everything is happening so fast you don’t have time to think things through. If you are feeling unsure about your options, check with your doctor how soon your treatment should start, and take as much time as you can before making a decision. Understanding details about the disease, the available treatments and their possible side effects will help you make a well-informed decision. This decision will also take into account your personal values and the things that are important to you and your family. It is common to feel overwhelmed by information so it may help if you read and talk about the cancer gradually. • Weigh up the advantages and disadvantages of different treatments, including the impact of any side effects. • If only one type of treatment is recommended, ask your doctor why other choices have not been offered. • If you have a partner, you may want to discuss the treatment options together. You can also talk to friends and family. You have the right to accept or refuse any treatment offered by your doctors and other health care professionals. Some people with advanced cancer choose treatment even if it only offers a small benefit for a short period of time. Others want to make sure the benefits outweigh the side effects so that they have the best possible quality of life. Some people choose options that focus on reducing symptoms and make them feel as well as possible. 62
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Talking with doctors When your doctor first tells you that you have cancer you may not remember all the details about what you are told. You may want to see the doctor again before deciding on treatment. Ask for the time and support to make your decision. If you have questions, it may help to write them down before you see the doctor. You can also check the list of suggested questions on page 79. Taking notes or recording the discussion can help too. Many people like to have a family member or friend go with them to take part in the discussion, take notes or simply listen. If your doctor uses medical terms you don’t understand, ask for an explanation in everyday language. You can also check a word’s meaning in the glossary (see page 80).
If you have several questions for your doctor, ask if it is possible to book a longer appointment.
A second opinion Getting a second opinion from another specialist may be a valuable part of your decision-making process. It can confirm or clarify your doctor’s recommendations and reassure you that you have explored all of your options. Some people feel uncomfortable asking their doctor for a second opinion, but specialists are used to people doing this.
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Your doctor can refer you to another specialist and send your initial results to that person. You can get a second opinion even if you have started treatment or still want to be treated by your first doctor. Alternatively, you may decide you would prefer to be treated by the doctor who provided the second opinion.
Taking part in a clinical trial Your doctor may suggest you consider taking part in a clinical trial. Doctors run clinical trials to test new or modified treatments and ways of diagnosing disease to see if they are better than current methods. Over the years, trials have improved treatments and led to better outcomes for people diagnosed with cancer. If you join what is called a randomised trial for a new treatment, you will be chosen at random to receive either the best existing treatment or the promising new treatment. To help you decide whether or not to participate, you can talk to your specialist or the clinical trials nurse. If you’re still unsure, you can also ask for a second opinion from an independent specialist. If you do decide to take part, you have the right to withdraw from the trial at any time; doing so will not jeopardise your ongoing treatment for cancer. For more information about clinical trials and other research, including questions to ask your doctor and how to find a suitable study, call Cancer Council Helpline 13 11 20. You can also find trials on the website www.australiancancertrials.gov.au. 64
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Looking after yourself Cancer can cause physical and emotional strain. It can also impact on your body image, relationships and outlook for the future. It’s important to take time to look after yourself by eating well, exercising, reducing stress and improving your wellbeing.
Healthy eating Having nutritious food will help you keep as well as possible and cope with the cancer and treatment side effects. Depending on your treatment, you may have special dietary needs. • If you have surgery, your decisions about what to eat will need to be guided by your surgeon, dietitian or speech pathologist. If • tube feeding (see page 54) is necessary, a dietitian will work with you to make sure you get the best nutrition possible. • If you want to take vitamin or antioxidant supplements, ask your dietitian or doctor about what is best, as not all supplements are appropriate. Cancer Council Helpline 13 11 20 can send you free information about nutrition during and after cancer treatment.
Staying active Research shows it is helpful to stay active and exercise regularly if you can. Physical activity, even if gentle or for a short duration, helps to improve circulation, reduce tiredness and elevate mood. The amount and type of exercise you do will depend on what you are used to, how well you feel and what your doctor advises.
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If you aren’t used to exercise or haven’t exercised for a while, make small changes to your daily activities. You could walk to the shops, take the stairs, do some gardening or join a gentle exercise class. If you want to do more vigorous or weight-bearing exercise, ask your medical team what is best for you.
Complementary therapies Complementary therapies are treatments that may help you cope better with side effects such as pain. They may also increase your sense of control over what is happening to you, decrease your stress and anxiety, and improve your mood. There are many types of complementary therapies, such as herbal medicine, acupuncture, massage, relaxation and meditation. Some cancer treatment centres offer these therapies as part of their services, but you may have to go to a private practitioner. Self-help CDs or DVDs can also guide you through different techniques. Let your doctor know about any complementary therapies you are using or thinking about trying. Some therapies may not be appropriate, depending on your medical treatment. For example, herbs and nutritional supplements may interact with your medication or surgery, resulting in harmful side effects. Massage, acupuncture and exercise therapies should also be modified if you have lowered immunity, low platelets or fragile bones. Call Cancer Council Helpline 13 11 20 for more information about complementary therapies. 66
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Relationships with others For many people, the experience of having cancer and any ongoing challenges causes them to make some changes in their life. You may also have a new outlook on your values, priorities, or life in general. Some people find that these changes can affect their relationships. However, sharing your thoughts and feelings with family, friends and colleagues may help to strengthen your relationships with them. If you feel uncomfortable talking about your feelings, take your time and approach others when you are ready. People usually appreciate insight into how you are feeling and guidance on providing support during and after treatment. Calling Cancer Council Helpline may help you build your confidence to discuss your feelings with others. Give yourself time to adjust to your cancer diagnosis, and do the same for friends and family. People often react in different ways, for example being overly positive, playing down fears, or keeping a distance. They are also dealing with the diagnosis and the changes. If someone’s behaviour upsets you, it might help to discuss how you both feel about the situation.
Some friends and family stepped up and were a great support, while others just disappeared. Understanding why some disappeared was one of my challenges. Marty (metastatic neck cancer)
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Sexuality, intimacy and cancer Having cancer can affect your sexuality in both physical and emotional ways. The impact of these changes depends on many factors, such as treatment and side effects, the way you and your partner communicate, the way you see your changed body, and your self-confidence. Knowing the potential challenges and addressing them as early as possible will help you adjust to these changes. Some people with cancer have the support of a partner, while others do not. If you meet a new partner during or after treatment, it can be difficult to talk about your experiences, particularly if the cancer has had an impact on your sexuality. While sexual intercourse may not always be possible during and immediately after treatment, closeness and sharing can still be a part of your relationship. For more information about sexuality issues, including coping with changes and tips for communication with your partner, call Cancer Council Helpline 13 11 20. You may also benefit from talking to somebody neutral about your concerns if you cannot resolve them yourself. See page 74 for suggestions about who to contact.
Chemotherapy and radiotherapy may affect your fertility. If having children is important to you, talk to your doctor before treatment so you know the risks and can decide whether to store sperm or eggs.
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Issues that may affect intimacy Change in sexual desire – Your sexual desire (libido) may
be reduced due to fatigue, your emotions, or physical changes. Talking with your partner may help you regain your sexual desire or may help you both adjust to these changes. Change in appearance – It’s common to feel self-conscious
about changes to your body. You may be concerned that if you have surgery or reconstruction to your face, or you have a tracheostomy or feeding tube, this will also change your partner’s attraction to you. It’s important to share these concerns with your partner or a counsellor. Today’s surgical techniques mean that scarring is unlikely to be significant for most people. Scars from surgery often lie either in the neck or in skin creases on the face. They are barely visible and often fade over time. A tracheostomy can be covered if you feel embarrassed. Stoma – Having a stoma may produce noisy breathing but the
stoma should not cause a physical problem with intimacy. Difficulty kissing – Some side effects (such as dry mouth,
bad breath due to changes in oral bacteria, poor tongue and lip movement, scars, or a stiff neck and jaw) can make kissing difficult. Surgery to the mouth may reduce sensation in the tongue or lips, which can affect the enjoyment and stimulus from kissing. This feeling should return in 12–18 months. Some partners adapt easily to changes in the way they kiss. Other people eventually regain some movement or choose to express their feelings in other ways, such as hugging, holding hands, or touching cheek-to-cheek.
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Changing body image It is common for people with head and neck cancer who have had facial surgery to feel uncomfortable in public or embarrassed because of physical changes. Your self-esteem may still be affected even if your body hasn’t physically changed. Give yourself time to adapt to any changes. Try to see yourself as a whole person (body, mind and personality). Most people in a relationship find that their partner is able to accept them despite any physical changes. You may benefit from speaking to a counsellor, social worker or psychologist. You can also consult a reconstructive surgeon, who may be able to make physical changes (such as scars) look less obvious or who can rebuild parts of your face and neck using tissue from other parts of your body.
Look Good...Feel Better program Cancer treatments, such as chemotherapy and radiotherapy, can sometimes cause side effects such as hair loss and skin irritation. These changes can make you feel self-conscious. Look Good...Feel Better is a free two-hour program for both
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men and women to teach them techniques using skin care, hats and wigs to help restore appearance and self-esteem during and after treatment. Call 1800 650 960 or visit www.lgfb.org.au for more information and to book into a workshop.
Life after treatment Life after cancer treatment can present its own challenges. You may need to take some time to adjust to any physical and emotional changes. You may have mixed emotions. Beforehand, you may have been busy with appointments and focused on treatment, but afterwards you may feel anxious or vulnerable. You might worry about every ache and pain and wonder if the cancer is coming back. Some people say that after cancer they have changed priorities and see life in a new way. For example, you may decide to travel, spend more time with family, or do volunteer work. Although you might feel pressure to return to normal life, you may find that you don’t want your life to return to how it was before cancer. You might find it helpful to: • take time to adjust to physical and emotional changes • re-establish a new daily routine at your own pace • spend time on a leisure activity you enjoy • maintain a healthy diet and lifestyle • schedule regular check-ups with your doctor • share your concerns with family and friends and tell them how they can support you • call Cancer Council Helpline 13 11 20 to connect with other people who have had cancer, or to request a free booklet about life after cancer.
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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, as counselling or medication – even for a short time – may help. Some people are able to get a Medicare rebate for sessions with a psychologist. Ask your doctor if you are eligible. Your local Cancer Council may also run a counselling program. The organisation beyondblue has information about coping with depression and anxiety. Go to www.beyondblue.org.au or call 1300 224 636 to order a fact sheet.
After treatment: follow-up After treatment, you will need regular check-ups to monitor your health and confirm that the cancer hasn’t come back. You will also receive continued support by your allied health team as you need it, or you may be referred to local services. Tests will include occasional scans, as well as physical and visual examinations of your head and neck. Over time, if there are no further problems, your check-ups will become less frequent. If you notice any new symptoms in-between check-ups, you should let your GP or specialist know as soon as possible.
What if the cancer returns? For some people, head and neck cancer does come back after treatment, which is known as a relapse or a recurrence. This 72
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is why it is important to have regular check-ups so that any recurring cancer can be found as soon as possible. If the cancer is only in the head and neck, it is likely you can have further treatment. You may have surgery to remove the cancer, or you may be able to have radiotherapy, depending on your previous treatment. If you are offered radiotherapy, it may be given with chemotherapy, or you may just be given chemotherapy by itself to try to control the cancer for as long as possible. Your doctor will discuss the types of treatment available to you.
Brien’s story After recurring laryngitis my GP referred me to an ENT specialist. A CT scan revealed a tumour on my left vocal fold. I had a biopsy done under a general anaesthetic. This showed that it was a squamous cell carcinoma. I had radiotherapy to my left vocal fold. In most cases this is successful, but a month later, a CT scan showed that the tumour had spread to my right vocal fold. My only treatment option now was surgery. I had a total laryngectomy to remove my voice box and had a new
airway made in the front of my neck (stoma). I had to learn to talk, swallow and keep my airways healthy. I use daily steam inhalations to help clear my chest secretions. It now takes me longer to eat as my food has to be chewed well and I’ve lost my sense of smell. It’s a lot of effort to communicate now but I picked it up in about a week. I use a voice prosthesis in my throat or alternatively what’s known as a handheld electrolarynx.
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Seeking support When you are first diagnosed with cancer, and during different stages of treatment and recovery, you may experience a range of emotions, such as fear, sadness, anxiety, anger or frustration. If sadness or anxiety is ongoing or severe, talk to your doctor. It may help to talk about your feelings. Your partner, family members and friends can be a good source of support, or you might prefer to talk to: • your treatment team • a counsellor, social worker or psychologist • your religious or spiritual adviser • a support group or someone who has had a similar experience to you – see page 76 Cancer Council Helpline. • If you need practical assistance, such as help around the house, it may be hard to tell people what would be useful. You might prefer to ask a family member or friend to coordinate offers of help. You may find that while some people you know are supportive, others struggle to know what to say to you. If you have children, the prospect of telling them you have cancer can be unsettling. Cancer Council has a range of free resources to help people talk about cancer and deal with the emotions that cancer may bring up. Publications are available for people with cancer, partners, carers, children, friends and colleagues. Call 13 11 20 for resources and support. You can also download booklets from the Cancer Council website. 74
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Practical and financial help A serious illness can cause practical and financial difficulties. Many services are available so you don’t have to face these problems alone: • Financial or legal assistance – through benefits, pensions and programs – may help pay for prescription medicines, transport costs to medical appointments, utility bills or basic legal advice. • Meals on Wheels, home care services, aids and appliances can be arranged to help make life easier at home. • Subsidised travel and accommodation may be available if you need to travel long distances for treatment. • Home nursing care may be available through community nursing services or local palliative care services. Ask Cancer Council Helpline or your hospital social worker, occupational therapist or physiotherapist which services are available in your area and if you are eligible to receive them.
Cancer Council library* Following a cancer diagnosis many people look for information about new types of treatment, the latest research findings and stories about how other people have coped. Cancer Council has a range of books, CDs, DVDs and medical journals that may be helpful for you. Call the Helpline for more information. * Not available in Victoria and Queensland
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Talk to someone who’s been there Coming into contact with other people who have had similar experiences to you can be beneficial. You may feel supported and relieved to know that others understand what you are going through and that you are not alone. There are many ways for you and your family members to connect with others for mutual support and to share information. In these support settings, people often feel they can speak openly and share tips with others. You may find that you are comfortable talking about your diagnosis and treatment, your relationships with friends and family, and your hopes and fears for the future. Ask your nurse, social worker or Cancer Council Helpline about suitable support groups and peer support programs in your area.
Types of support services* Face-to-face support groups – often held in community centres or hospitals
Online discussion forums – where people can connect with each other at any time – see www.cancerconnections.com.au Telephone support groups – for certain situations or types of cancer, which trained counsellors facilitate
Peer support programs – match you with a trained volunteer who has had a similar cancer experience, e.g. Cancer Connect. * Not available in all areas
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Caring for someone with cancer You may be reading this booklet because you are caring for someone with cancer. Being a carer can be stressful and cause you much anxiety. Try to look after yourself – give yourself some time out and share your worries and concerns with somebody neutral, such as a counsellor or your doctor. Many cancer support groups and cancer education programs are open to carers, as well as people with cancer. Support groups and some types of programs can offer valuable opportunities to share experiences and ways of coping. Support services such as Home Help, Meals on Wheels or visiting nurses can help you in your caring role. There are also many groups and organisations that can provide you with information and support, such as Carers Australia, the national body representing carers in Australia. Carers Australia works with the Carers Associations in each of the states and territories. Phone 1800 242 636 or visit www.carersaustralia.com.au for more information and resources. You can also call Cancer Council Helpline 13 11 20 to find out more about different services and to request free information for carers and families looking after someone with cancer.
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Useful websites The internet has many useful resources, although not all websites are reliable. The websites listed below are good sources of information.
Australian Cancer Council Australia ���������������������������������������� www.cancer.org.au Cancer Institute NSW................................www.cancerinstitute.org.au eviQ – Cancer Treatments Online ������������������������������� www.eviq.org.au Department of Health and Ageing ���������������������������www.health.gov.au Health Insite.................................................... www.healthinsite.gov.au Laryngectomee Association of NSW �������������������� www.stilltalking.org Australian and New Zealand Head and Neck Cancer Society ����������������������������������������������������������� www.anzhns.org Speech Pathology Australia.................................. www.speechpathologyaustralia.org.au Australian Society of Otolaryngology Head and Neck Surgery......................................... www.asohns.org.au
International American Cancer Society �������������������������������������������� www.cancer.org Macmillan Cancer Support �������������������������������www.macmillan.org.uk US National Cancer Institute ���������������������������������������www.cancer.gov Support for People with Oral and Head and Neck Cancer �������������������������������������������������������� www.spohnc.org The Oral Cancer Foundation.............. http://oralcancerfoundation.org Web Whispers................................................... www.webwhispers.org Pocket Cancer Care Guide........................ www.canceradvocacy.org/ resources/pocket-care-guide/
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Question checklist You may find this checklist helpful when thinking about the questions you want to ask your doctor about your disease and treatment. If your doctor gives you answers that you don’t understand, ask for clarification. • What is the location of the cancer? How extensive is it? • What treatment do you recommend and why? Are there other treatment choices for me? If not, why not? • Are the latest tests and treatments available in this hospital? • How long will treatment take? Will I have to stay in hospital? • Who will be my primary physician who coordinates my care? • How much will treatment cost? • Will I have a lot of pain with the treatment? What will be done about this? • What are the risks and possible side effects of each treatment? • What kind of rehabilitation will be available to me afterwards? • When can I return to work or my usual activities? • Will my face or neck have significant scarring or will I look different? What can be done to minimise this? • Will the treatment affect my sex life and/or fertility? • Are there any clinical trials of new treatments, or other research studies I could join? • How frequently will I need to have check-ups? • Are there any complementary therapies that might help me?
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Glossary You may come across new terms when reading this booklet or talking to health professionals. You can check the meaning of other health-related words at www.cancercouncil.com.au/words or www.cancervic.org.au/glossary.
advanced cancer
bone scan
Cancer that has spread deeply
A technique to create images of
into the surrounding tissues or
bones on a computer screen. A
away from the original location
small amount of radioactive dye
(metastasised) and is less likely to
is injected into a vein. It collects
be cured.
in the bones and is detected by a
anaesthetic
scanning machine.
A drug that stops a person
brachytherapy
feeling pain during a medical
A type of radiotherapy treatment
procedure. A local anaesthetic
that implants radioactive material
numbs part of the body; a general
sealed in needles or seeds into or
anaesthetic causes a person to
near cancerous cells. Also called
lose consciousness for a period
internal radiotherapy.
of time.
bronchoscopy An internal examination of the
benign
airways using a tube called a
Not cancerous or malignant.
bronchoscope that is inserted
Benign lumps are not able to
into the mouth, throat and lungs.
spread to other parts of the body.
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biopsy
cancer of unknown primary
The removal of a small sample
Cancer is found in the body but
of tissue from the body, for
the location where the cancer
examination under a microscope,
first started growing (the primary
to help diagnose a disease.
site) cannot be determined. Also
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called cancer of occult primary.
dysphagia
cells
Difficulty swallowing.
The basic organisational unit of all living things. A human is made
endoscope
of billions of cells, which are
A tube with a camera and a light
adapted for different functions.
on it that can be inserted into
chemoradiation
different cavities in the body for a
Treatment that combines
close examination. They are often
chemotherapy with radiotherapy.
named after the part of the body
chemotherapy
they are designed to examine,
The use of cytotoxic drugs to
such as a laryngoscope for the
treat cancer by killing cancer cells
larynx.
or slowing their growth.
endoscopic surgery
cordectomy
A type of surgery for cancers that
Surgery to remove a vocal cord.
can be accessed through the
craniofacial resection
nasal cavity. Tissue is removed
Surgical removal of a tumour
using an endoscope and no
involving a cut through the face.
surgical cuts need to be made.
CT scan
epiglottis
A computerised tomography
The small cartilage flap in your
scan. This type of scan uses
throat that moves when you
x-rays to create a picture of the
swallow to close over the trachea
body.
and prevent food or fluid from going down the wrong way.
dietitian
Epstein-Barr Virus (EBV)
A health professional who
A common virus in the herpes
supports and educates patients
family that may increase a
about nutrition and diet during
person’s risk of developing some
treatment and recovery.
types of cancer.
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erythroplakia
into the stomach. It is usually
A red velvety spot or patch in the
created to place a feeding tube.
mouth that may be precancerous.
glossectomy
ethmoid sinuses
The surgical removal of part or all
Sinuses located behind the
of the tongue.
ethmoid bone in the skull.
external beam radiotherapy
hemilaryngectomy
The use of high-energy
Surgery to remove the left or right
radioactive beams to kill cancer
half of the larynx.
cells or injure them so they cannot multiply. The beams of
Human papillomavirus (HPV)
radiation are directed at the
A group of viruses that can cause
cancer from a machine.
infection in the skin surface of different areas of the body,
facial nerve
including the genital area. HPV
A major nerve in the skull that
may be a risk factor for some
controls muscle movement in the
types of cancer. Also called the
face. It runs through the parotid
wart virus.
salivary gland.
hypopharynx
fenestrated tracheostomy
The lowest part of the back
A tracheostomy tube with an
of the throat. Also called the
opening to allow air to flow
laryngopharynx.
through the voice box.
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frontal sinuses
intravenous
Sinuses located behind the
Inserted into a vein.
forehead.
intensity modulated radiation therapy (IMRT)
gastrostomy
A type of radiation therapy that
An opening through the abdomen
allows the beams of radiation to
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be shaped around the tumour,
to gain access to the nasal cavity
resulting in less damage to
and sinuses.
surrounding healthy tissue.
leukoplakia A white spot or patch in the
laryngectomy
mouth that may be precancerous.
The surgical removal of the
lymph nodes
larynx. In a partial laryngectomy,
Small, bean-shaped structures
only part of the larynx is removed.
that form part of the lymphatic
laryngopharyngectomy
system. Also called lymph glands.
The surgical removal of part or all
lymphatic system
of the larynx and pharynx.
A network of tissues, capillaries,
laryngopharynx
vessels, ducts and nodes that
See hypopharynx.
removes excess fluid from
laryngoscopy
tissues, absorbs fatty acids and
A procedure that allows the
transports fat, and produces
doctor to closely examine the
immune cells.
larynx and pharynx using a tube inserted into your mouth and
malignant
throat (laryngoscope).
Cancer. Malignant cells can
larynx
spread (metastasise) and can
The voice box. The larynx houses
eventually cause death if they
the vocal cords and connects the
cannot be treated.
pharynx with the trachea.
mandible resection
laser surgery
Removal of part of the lower jaw
The use of an intense light beam
(mandibulectomy) or upper jaw
(a laser) that works like a knife to
(maxillectomy).
cut or remove tissue.
mandibulotomy
lateral rhinotomy
Cutting the lower jaw to give
A cut along the edge of the nose
access to the mouth or throat.
Glossary
83
maxillary sinuses
mucositis
Sinuses located under the eyes
Inflammation in the digestive tract.
and within the maxillary (cheek) bones.
nasal cavity
mechanical speech
The large, air-filled space located
The use of a battery-powered
behind the nose and in the middle
device (such as an electrolarynx)
of the face.
to create vocal sounds.
nasendoscopy
metastasis
An internal examination of the
A cancer that has spread from
nose and upper airways using
another part of the body. Also
a long, flexible tube called an
known as secondary cancer.
endoscope.
metastatic neck cancer with unknown primary
nasogastric (NG) tube
Cancer that is found in the lymph
in through the nasal passageway
nodes of the neck but the primary
and directly into the stomach.
location cannot be determined.
nasopharynx
Often it is thought to be a type
The open cavity that lies behind
of head and neck cancer, and is
the nose and above the soft
treated as such.
palate.
midface degloving
neck dissection
Surgical access to the nasal
Surgery to remove lymph nodes
cavity or sinuses using a cut
and some surrounding structures
under the upper lip.
in the neck, such as muscle, fat
MRI scan
or nerves.
A plastic feeding tube that passes
A magnetic resonance imaging
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scan that uses magnetism and
obturator
radio waves to take detailed cross-
A special prosthesis or plate
sectional pictures of the body.
that is used to close a gap in the
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palate, to form a new roof of the
and other physical and emotional
mouth.
symptoms.
oesophageal speech
paranasal sinuses
Inhaling or injecting air into the
Air-filled spaces within the head
top of your oesophagus and then
that lighten the weight of the skull.
out again to produce a voice after
parathyroidectomy
a total laryngectomy.
The removal of the parathyroid
oesophagus
glands, which regulate calcium in
The tube that carries food from
the body.
the throat into the stomach.
parotid gland
oral
One of the major salivary glands.
Refers to the mouth, including the
It is found just in front of the ears.
lips, gums, cheeks, floor of the mouth, front of the tongue, and
percutaneous endoscopic gastrostomy (PEG) tube
inside area of the jaws.
A feeding tube inserted directly
orbital exenteration
into the stomach through the
The surgical removal of the eye
abdomen. A gastroenterologist
and other contents of the orbit.
does the procedure.
oropharynx
PET scan
The part of your throat that
A positron emission tomography
includes the soft palate and
scan. A specialised imaging test
tongue base.
that uses a radioactive glucose
osteoradionecrosis (ORN)
solution to identify groups of
A breakdown of bone tissue due
cancer cells in the body.
to radiotherapy treatment.
pharyngectomy The surgical removal of part or all
palliative treatment
of the pharynx.
Medical treatment for people with
pharynx
cancer to help them manage pain
The throat. This is a muscular
Glossary
85
tube about 10cm long that
saliva
extends from the back of the
The watery substance released into
nose to the top of the larynx and
the mouth from salivary glands.
oesophagus.
Also called spit.
prognosis
salivary ducts
The likely outcome of a person’s
Small openings in the oral cavity
disease.
that release saliva into the mouth.
prosthesis
The ducts are connected to the
An artificial replacement for a lost
salivary glands.
or damaged body part.
salivary glands Glandular tissue where saliva
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radiotherapy
is made. The major glands
The use of radiation, usually
are located in front of the ears
x-rays or gamma rays, to kill
(parotid gland), and under the
cancer cells or injure them so
oral cavity (sublingual and
they cannot grow and multiply.
submandibular glands).
reconstructive surgery
salivary gland cancer
Surgery to rebuild an area of the
A type of cancer that affects
body that has been damaged.
the salivary glands. It mainly
rhinectomy
develops in the parotid gland.
The surgical removal of part or all
sphenoid sinuses
of the nose.
The sinuses located at the centre
radiologically inserted gastrostomy (RIG)
of the base of the skull.
A feeding tube inserted directly
Performing tests to determine
into the stomach through the
how far the cancer has spread.
abdomen using x-rays or other
supracricoid laryngectomy
scans. A radiologist does the
Surgery to remove the upper part
procedure.
of the larynx, including vocal cords.
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staging
supraglottic laryngectomy
a tube is passed to create a
Surgery to remove the upper part
clear airway. The hole is called a
of the larynx above the vocal
tracheostomy, but it is sometimes
cords (supraglottis).
referred to as a tracheostoma.
trismus thyroid
Difficulty opening the mouth fully,
A butterfly-shaped endocrine
with usually less than 20mm
gland located at the base of
between top and bottom teeth
the neck. The thyroid releases
tumour
hormones to control the body’s
A new or abnormal growth of
metabolism and calcium levels.
tissue on or in the body. A tumour
tonsils
may be benign or malignant.
Small masses of lymphatic tissue on either side of the back of the
ultrasound
mouth that help to fight infection.
A non-invasive scan that uses
trachea
soundwaves to create a picture
The windpipe. The trachea is
of part of the body. An ultrasound
the airway that brings air inhaled
scan can be used to measure the
from the nose and mouth into the
size and location of a tumour.
lungs.
tracheoesophageal speech
vocal folds
When a person forces air through
The part of the larynx that
a surgically created valve between
vibrates to produce the sounds
the trachea and oesophagus to
required for speech. Also called
create a low-pitched, throaty voice.
vocal cords or the glottis.
tracheostomy An operation in which a hole is
xerostomia
made at the base of the neck into
Dry mouth.
the trachea, and through which Glossary
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How you can help At Cancer Council we’re dedicated to improving cancer control. As well as funding millions of dollars in cancer research every year, we advocate for the highest quality care for cancer patients and their families. We create cancer-smart communities by educating people about cancer, its prevention and early detection. We offer many free practical and support services for people and families affected by cancer. All these programs would not be possible without community support, great and small. Join a Cancer Council event: Join one of our community fundraising events such as Daffodil Day, Australia’s Biggest Morning Tea, Relay For Life, Girls Night In and Pink Ribbon Day, or hold your own fundraiser or become a volunteer. Make a donation: Any gift, large or small, makes a meaningful contribution to our work in supporting people with cancer and their families now and in the future. Buy Cancer Council sun protection products: Every purchase helps you prevent cancer and contribute financially to our goals. Help us speak out for a cancer-smart community: We are a leading advocate for cancer prevention and improved patient services. You can help us speak out on important cancer issues and help us improve cancer awareness by living and promoting a cancer-smart lifestyle. Join a research study: Cancer Council funds and carries out research investigating the causes, management, outcomes and impacts of different cancers. You may be able to join a study. To find out more about how you, your family and friends can help, please call your local Cancer Council.
Cancer Council Helpline 13 11 20 Cancer Council Helpline is a telephone information service provided by Cancer Council NSW for people affected by cancer. For the cost of a local call (except from mobiles), you can talk about any concerns confidentially with oncology health professionals. Helpline consultants can send you information and put you in touch with services in your area. If you need information in a language other than English, an interpreting service is available. You can call the Helpline, Monday to Friday, 9am to 5pm. If you have difficulty communicating over the phone, contact the National Relay Service (www.relayservice.com.au) to help you communicate with a Cancer Council Helpline consultant. For more information, go to www.cancercouncil.com.au.
Regional offices Central and Southern Sydney Woolloomooloo Ph: 02 9334 1900 Central Coast Erina Ph: 02 4336 4500 Far North Coast Alstonville Ph: 02 6627 0300 Hunter Broadmeadow Ph: 02 4923 0700
Mid North Coast Coffs Harbour Ph: 02 6659 8400
Southern North Wollongong Ph: 02 4223 0200
North West Tamworth Ph: 02 6763 0900
Western Orange Ph: 02 6392 0800
Northern Sydney Crows Nest Ph: 02 9334 1600
Western Sydney Parramatta Ph: 02 9354 2000
South West Wagga Wagga Ph: 02 6937 2600
UNDERSTANDING head and neck cancers
For further information and details please visit our website: www.cancercouncil.com.au
AUG 2012 CAN1161
For support and information on cancer and cancer-related issues, call Cancer Council Helpline. This is a confidential service.