Lung Cancer Answering your Questions Project Manager: Jennifer Dickson

Thanks to others who provided valuable professional advice. Clinical photographs: Medical Illustration Department, GGC

Seventh Edition 2010

© The Roy Castle Lung Cancer Foundation Registered Charity Number England and Wales 1046854 - Scotland SCO37596

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, including photocopying, recording or otherwise, without the prior permission of The Roy Castle Lung Cancer Foundation. CONTENTS

Introduction 2 Background information 3

Understanding lung cancer 4

Common signs and symptoms 7

Lung cancer tests 8

Coping with a lung cancer diagnosis 12

Types of lung cancer 16

Treatments for lung cancer 19 Surgery for lung cancer 23 Chemotherapy for lung cancer 25 Radiotherapy for lung cancer 31 Other treatments for lung cancer 36 Clinical trials 38 Complementary therapies 40

If you’re not happy with your care 42

Lung cancer health professionals 43

Living with lung cancer 46 Managing everyday activities 46 Financial help 48 Life after lung cancer 50 If your lung cancer can't be cured (Supportive and palliative care) 51

Glossary of terms 54

How we can help 56

Useful organisations 58

Useful websites 59 ?1 If you or someone you care for has just been diagnosed with lung cancer then it's almost certain that you will have lots of questions needing answered.

This booklet was designed by patients and healthcare professionals to help you learn more about lung cancer. All of the treatment information in this booklet is evidence based. This means; the recommended best treatment options for lung cancer taken from National Clinical Guidelines (see page six).

INTRODUCTION Understanding your disease will help you and your carers make informed decisions and hopefully help you to gain the most from your treatment unit. Please remember that most healthcare professionals are only too happy to answer your questions and will welcome the opportunity to address any of your concerns. Therefore, this booklet is not a substitute for professional advice but more of a guide through the lung cancer journey. This booklet contains a lot of information about lung cancer and not all of it will be relevant to you. Although you may find reading the whole booklet useful, it may be best to refer to the contents page to find information that is important to you.

We hope that this booklet will be of use to you. However, if any of your questions remain unanswered, please do not hesitate to contact one of the many support agencies (telephone numbers and addresses printed at the back).

?2 INTRODUCTION Background information Lung cancer is the most common cancer in the world. In the United Kingdom, around 39,000 new cases are diagnosed each year and it is estimated that, at any one time, there are 65,000 people living with lung cancer.

It is known that smokers and ex-smokers have a particularly high risk of developing the disease: although most lung cancers Sheffield are related to smoking, 10% of people with lung cancer Birmingham have never smoked. However, there are other factors that increase the risk of developing lung cancer disease, for example, Areas with above exposure to chemicals found average rates of lung in the workplace or environment, such as: cancer in Scotland, asbestos, radon, diesel England and Wales. exhaust fumes, synthetic fibres and many others. Current research suggests that lung cancer is not hereditary. However, this is still being researched.

If you were/are a smoker it is important to recognise that, although your smoking habit may have contributed, it may not be the only cause of the cancer. There are almost certainly other factors involved but perhaps not yet understood. Therefore, you should never feel stigmatised or guilty (15-20% of smokers develop lung cancer). ?3 What is lung cancer?

Lung cancer is a term used to describe a growth of abnormal cells inside the lung - these cells reproduce at a much quicker rate than normal cells. The abnormal cells grow to form a growth, a lump that is described by doctors as a tumour. If the abnormal cells first started growing in the lung, it is called a primary lung tumour. If the abnormal lung cells break off and travel in the blood or lymphatic circulation, they may start to grow in other areas of the body, for example bones. This new growth is called a secondary tumour or metastasis. There will be more information later on in the booklet about lung cancer metastasis (see page 18).

Trachea (windpipe) Lining (pleura) Lymph nodes Bronchus Bronchus UNDERSTANDING LUNG CANCER UNDERSTANDING

Left lung Right lungDiaphragm Heart ?4 UNDERSTANDING LUNG CANCER Is there a cure for lung cancer? Yes, it is possible to be cured of lung cancer, but it is important to realise that there are many different types of lung cancer. Your treatment and chance of cure will depend on the following:

• Where in the lung the tumour is growing. • The type of abnormal cells that form the tumour. • If the cancer has spread to any other areas of the body. • Physical and emotional fitness.

Discuss with your doctor which treatment will work best for you. Later in the booklet there is information on the different types of lung cancers and which treatments should be used for each type (see page 16).

Lung cancer treatments are developing all the time, although there is still scope for improvement. It is a common misunderstanding that surgery is the only effective treatment for lung cancer. This is definitely not the case and great care will be given to choosing the right treatment for you. Do ask why your doctors may have chosen one type of treatment over another. It is important that you and your family understand and are happy with the treatment being offered.

How do I find out more? You and your family might want to find out more about lung cancer and the most effective treatments for it. However, please be very careful which sources you believe, as there is a lot of inaccurate or misleading information on the internet and in general media circulation. Recommended websites and support organisations are listed at the back of the booklet.

?5 ? 6 UNDERSTANDING LUNG CANCER available forbothguidelines. management oflungcancer. Apatientinformationbookletis also Both oftheabovepublicationsareveryhelpfulindetailing www.nice.org.uk. 7783 free ofchargetelephonetheNICEPublicationsOfficeon Institute forClinicalExcellence(NICE).To obtainapatientversion and Treatment ofLungCancer, andisproducedbyNational The ClinicalGuidelineforEnglandandWales iscalledTheDiagnosis or visittheirwebsite:www.sign.ac.uk. of thisguidelinefreechargetelephonethemon: Scottish IntercollegiateGuidelinesNetwork(SIGN).To obtainacopy is producedbyagovernmentfundedorganisationcalledthe The ScottishClinicalGuidelinefortheManagementofLungCancer extent whatisactuallyavailablewithinyourarea. have budgetsorpersonalpreferenceswhichmaydictatetosome treatment oflungcancer. Howeverhealthauthorities/clinicians Yes, withintheNHStherearenationalclinicalguidelinesfor of lungcancer? Are thererulesandregulationsforthetreatment and quotereferencenumberNO826orvisittheirwebsiteat 0131 6234720 0845 003 , COMMON SIGNS AND SYMPTOMS What are the symptoms of lung cancer?

There are a variety of ways in which lung cancer may make itself known. Some people only discover it during a routine medical check-up, whilst others may have had signs and symptoms for many months.

It is worth asking your doctor for an x-ray or second opinion if you have any of the following unexplained symptoms for more than three weeks:

• A cough that doesn’t go away after two to three weeks.

• Worsening or change of a long standing cough.

• Repeated chest infections.

• Coughing up blood.

• Unexplained persistent breathlessness.

• Unexplained persistent tiredness.

• Unexplained persistent weight loss.

• Persistent chest and/or shoulder pain.

It may be that the actual lung tumour does not cause problems to the chest, but that the spread to other areas of the body is what actually alerts you or your doctor to there being a problem.

?7 What are the different tests for lung cancer?

There are many methods of testing for lung cancer. Remember that each patient is treated as an individual and therefore your doctor will only choose the most appropriate tests for you. Below is a list of tests that may be used to diagnose lung cancer.

Test What it means

Blood test Can help in finding out about your general health and possible spread of lung cancer. Can provide information on many aspects of health including:

• How well your kidneys and liver are working LUNG CANCER TESTS (Creatinine/LFT's).

• If your body's biochemistry is balanced (for example, enough calcium and protein).

• Ongoing/vulnerability to infection (white cell count).

• Anaemia/lack of circulating oxygen (haemoglobin).

• Susceptibility to bruising/bleeding (platelets).

Bone scan A scan where a small amount of radioactive material is injected into a vein to highlight any areas of the bones that have been affected by cancer, trauma, or inflammation. Normally done on an outpatient basis.

?8 9

LUNG CANCER TESTS ?

A scan that gives a 3D picture of your body's A scan that gives a 3D picture of organs. Can help the to determine whether cancer has spread to other organs if it is and nodes (glands) or affecting any of the lymphatic or drink blood vessels. Sometimes an injection some of the (gastrografin) is given to highlight but you might organs in the gut. The scan is painless feel slightly "boxed in" as it rotates around your If you suffer from claustrophobia you should body. tell the staff as they will be able to reassure you throughout the scan. A simple x-ray of the chest which can sometimes A simple x-ray of the chest which infection, show abnormalities such as inflammation, scarring or growths. Allows the doctor to examine, photograph, and when photograph, examine, to the doctor Allows tissue from (biopsy) of take a tiny sample possible, this test Before of your lungs/airways. the inside sedative and a relaxing is sprayed numb your throat a tiny flexible tube with given. A narrow may be your will then be inserted down camera on the front This shows a picture of nose or mouth. when possible can slide down airways/lungs, and in your lung that seems suspicious. towards the area be the end of the camera will then Little pinchers on is of the growth. If the sample used to take a sample not it it is called malignant, if found to be cancerous point the cell type of lung cancer is benign. At this established. you have may be be uncomfortable and This test is not painful but can a few days. A leave you with a sore throat for as an outpatient or bronchoscopy can be done either an overnight stay in hospital. What it means What

Test

CT scan (computerised tomography)

Chest x-ray Bronchoscopy ? 10 LUNG CANCER TESTS imaging) resonance (magnetic MRI scan Mediastinoscopy scan Lung perfusion tests Lung function Test reassure youthroughout theprocedure. should tellthestaffastheywillbeableto the machine.Ifyousufferfromclaustrophobia you scan, asitwillbeattractedtothemagnetinside duringthe x-rays. Nojewellerymustbeworn magnetsinsteadof type of3Dimage-using aCTscannerbutgivesdifferent similar to A painlessbutnoisyscanningmachinewhichis done onanoutpatientbasis. photographs aremadeofthechest.Normally that candetecttheproteinandaseriesof will thenbepositionedunderaspecialcamera is injectedintoaveininyourhandorarm.You take inair. Asmallamountofradioactiveprotein the lungs.Measuresabilityoflungsto A scanthatproducesapictureofbloodflowto tests usuallyinvolveblowingintoamouth-piece. conditions, suchasemphysema.Thesesimple radiotherapy, orifyouhaveanyongoinglung decide ifyouarefitenoughforsurgery, lungs areworking(air/oxygencapacity).Mayhelp These areteststoestablishhowwellyour short stayinhospital. This testrequiresageneralanaestheticand under thebreastbone(willleaveasmallscar). A surgicalprocedureforexamininglymphnodes What itmeans LUNG CANCER TESTS Test What it means

PET scan A scan that gives pictures showing where there (positron is active cancer throughout the body. A PET emission scan should be used before lung cancer tomography) surgery and radical radiotherapy, to make sure that curative treatment is possible (a PET scan is more accurate than a CT scan for this purpose). A PET scan can also be used to investigate a suspected cancer, if diagnosis has not been possible using other tests. An injection with a tiny amount of radiotracer is given to highlight any active cancer cells. The scan is painless and quiet and you will not be fully encased during the examination.

Sputum A sample may assist in establishing if you have (spit) any infections or blood present. Your hospital or GP can perform this test.

Ultrasound This is a painless scan that uses soundwaves to create an image of the inside of your body. It may be used to examine inside the kidneys, liver and lung. It is frequently used to pinpoint fluid in the lung.

?11 I've just been told that I have lung cancer - how will I cope?

Being diagnosed with lung cancer can be a deeply distressing event for you and those closest to you. It may feel as though life has been turned upside down as the word cancer is often linked with fears about treatment in a hospital, and sometimes wrongly, a shortened future and the possibility of dying. Fear of the unknown and uncertainty about the future can be very stressful. The news of lung cancer may arrive as a bolt out of the blue, or you may have had suspicions about symptoms for quite a while. Even so, the news can be devastating and can cause a range of emotions, which may come to the surface at different times in the days, weeks and months following your diagnosis. Such emotions may include a period of numbness, disbelief, shock, extreme sadness, anger, guilt, feelings of helplessness and fear. Many people find themselves looking for reasons and asking "why me?". For others, a diagnosis of lung cancer may mean that life will never seem or be the same again. In the early stages following your diagnosis, it is not unusual to feel as though you can think of little else. You may also find that your sleep is disturbed and that you are very anxious about the future. Feelings such as those described above are very common when faced with a crisis. They are not signs of being unable to cope. It is entirely normal to experience a range of strong and sometimes, uncontrollable emotions after a diagnosis. There is no right or wrong way to feel but you shouldn't add to your distress by feeling guilty about how you feel or about the diagnosis. You may find that some situations trigger more anxiety, for example, attending hospital appointments, reading about lung cancer in the newspaper or watching a programme on television. Future treatments and tests may also increase your anxiety. Finally, some people report that these feelings can be at their worst at particular times of the day or night. Understanding that there is a pattern to your feelings can be

COPING WITH THE DIAGNOSIS OF LUNG CANCER the first step in starting to manage them better. Throughout your diagnosis, treatment and afterwards, try to accept that these reactions are normal. If you feel you need to, allow yourself time to cry. This can often be a helpful way of dealing with bottled up emotions. Learning a relaxation technique can also be very helpful as it can help you switch off your mind from worries and also relax your body. ?12 How long will it take me to come to terms with my COPING WITH THE DIAGNOSIS OF LUNG CANCER diagnosis?

In the days and weeks following diagnosis, as you start to come to terms with the news, it is usual for these reactions to start to settle, although this varies from person to person. It is important that you should not be afraid to discuss your feelings and ask for support if you feel you need it. In some cases, people try to hide their emotions for fear of affecting others. However, keeping emotions bottled up often allow things to seem much worse. At first, some people find that it is difficult to talk and need some time to sort things out in their own mind. Being able to talk openly about your thoughts and feelings with others such as family, friends, your doctor or nurse, can be very helpful. Also getting support with practical tasks, such as housework and shopping, may also be useful in reducing some of the pressure you may be feeling.

What if I feel that I can't cope with my diagnosis?

If your feelings and worries are interfering a lot with your day to day life and you are finding it difficult to cope, it may be worthwhile contacting your doctor or nurse. There are many professionals who can help with any problems you may be experiencing.

Having negative thoughts and beliefs about your health can be difficult and in some cases, may lead to depression, anxiety and a loss of self-confidence. One way of dealing with this is to keep yourself involved in activities you enjoy and give you a sense of well being. You may find that your imagination can run riot and things start to get blown out of proportion. It is important to try and focus your mind on things which are definite rather than on the "what ifs". Some people who “Once you get a have been diagnosed with lung cancer say diagnosis, that it can be helpful to maintain a normal isn’t positive, hopeful attitude. If possible, try normal anymore, to keep a sense of humour, which can be priorities just helpful if faced with difficult new situations. shift.” ?13 How do I tell the children? If you have children it may seem natural to try to protect them from the news. Even if they have not been told about the diagnosis, it is not unusual for children to know from the reactions of others that something is wrong. Occasionally when children are not included in the diagnosis in some way, their imaginations can take over.

If you have young children and decide to tell them about your diagnosis and treatment, it is best to try to avoid too much medical jargon and provide information at a level that they will understand. It is surprising how well some children do cope with the news. However, others may need some time to come to terms with things.

It can be helpful to explain to children that it is normal for them to experience “When I was some strong emotions and you may notice diagnosed my some changes in their behaviour. It is daughter said, ‘Why important for them to discuss any worries you Mum?’ I said , with you openly. Sometimes taking them why not me? It’s to hospital visits and introducing them to happened, now let’s staff can help reduce some of their fears. get on with it.”

There are a number of very useful books, which have been written specifically for children on the subject of illness in the family. A list of reading material for children is available from Macmillan Cancer Support (contact details are at the back of the

COPING WITH THE DIAGNOSIS OF LUNG CANCER booklet). If you have concerns about changes in a child's behaviour or emotional state, it may be useful to discuss it with your GP.

?14 How will family members and friends cope with the COPING WITH THE DIAGNOSIS OF LUNG CANCER diagnosis?

Dealing with a diagnosis of lung cancer involves not only coping with your own reactions but also the reactions of others around you. Some people may be very understanding, very helpful and know all the right things to say. Others may be over-protective, which at times can be very trying. Sometimes, family and friends find it difficult to find the right balance between being supportive without being overly so and allowing you to remain independent without appearing uncaring. Many have possibly never had to deal with cancer before and may find it difficult to understand your situation. They may be very unsure about what to say to you and your family, or it may seem that people you know are avoiding you. Such lack of understanding can sometimes be very isolating and this can add to your distress. If you can, try to keep in touch with people who are supportive. It is important to talk openly about your feelings and worries with people who can support you. Remember, whatever worries or anxieties you are experiencing, it is likely that your family and close friends are feeling them too.

?15 Are there different types of lung cancer? Yes, there are in fact quite a few different types of lung cancer but in general the disease is split into two main categories: • Small cell lung cancer (SCLC). • Non-small cell lung cancer (NSCLC). Approximately 80% of people with lung cancer have non-small cell making it the most common group, whilst the remaining 20% have small cell. Non-small cell lung cancer can be further sub-divided, as there are also different types of non-small lung cancer. Each one is made up of a different type of abnormal cell.

What is small cell lung cancer? Small round cells that form fleshy lumps and usually start in the

TYPES OF LUNG CANCER larger airways. This type of lung cancer cell reproduces and grows very quickly. It may spread to the lymph nodes and/or other organs in the body. It is generally more responsive to chemotherapy treatment. However radiotherapy may also be used. In rare cases this type of lung cancer can be surgically removed. Small cell lung cancer often reoccurs within a short space of time; therefore, you will attend regular check- ups to ensure any reoccurrence is found quickly.

What are the different types of non-small cell lung cancer? Adenocarcinoma - this is a little more common in women and is more commonly seen as a lump in the outer parts of the lung. There is a rarer form where an excess of sputum is produced. Squamous carcinoma - this is the commonest type of lung cancer in Great Britain and often forms in the larger, more central airways. Large Cell carcinoma - this type of lung cancer is generally more aggressive and often arises in the larger air passages. It has a tendency to spread outside the lung at an earlier stage. All types of NSCLC are potentially suitable for surgery if they are diagnosed at an early enough stage. ?16 TYPES OF LUNG CANCER Can other cancers occur in the lungs?

Yes, there are a variety but most of them are rare. Mesothelioma and Carcinoid are two of the more common types, and are detailed below. Mesothelioma: It is closely associated with a history of asbestos exposure either through work or contact with a person in the asbestos industry. It generally affects older males and may take 35-40 years from the date of first exposure for the cancer to develop. The cancer cells usually situate in the lining of the lung and have a habit of producing fluid. This may require draining from time to time, but can improve breathing. For more specific information about Mesothelioma see useful websites on page 58. There has been great debate as to the most effective treatments for this type of lung cancer; therefore it is worth discussing your options with your cancer doctor. It may be that you are offered a treatment that is still under clinical trial (see page 39). This may involve having chemotherapy and/or radiotherapy. Please note that financial compensation from the government may be available if lung damage from exposure to asbestos is proven. There are contact numbers at the back of the booklet that will provide further information on this procedure. Carcinoid Tumour: This is a rare tumour of the lung (less than 1% of all lung cancers) which is generally much less aggressive than other types. It is more common in a younger age group. The tumour develops in the glandular cells in the lung (called neuroendocrine cells) and, as the disease progresses can produce symptoms such as hot flushes, diarrhoea and wheezing. Surgery is usually curative but chemotherapy and radiotherapy are also sometimes required. Other tumours are so rare that current information is best given by your treatment specialist doctor or nurse. Below are some further unusual types of lung tumour: • Hamartoma. • Bronchial gland tumours. • Lymphoma. • Mesenchymal. • Pleural fibroma. • Sarcoma. ?17 Is it an advantage to know what type of lung cancer I have? Yes, the most effective and appropriate treatment for you will vary depending on what type (pathology) of lung cancer you have, as different types of lung cancer respond to different treatments.

Does lung cancer spread?

Although lung cancer frequently develops in a single spot on the lung, it can also spread to other areas of the body. The most common places of spread are the lymph nodes, bones (including the spine), liver, adrenal glands, skin and the brain. It is not unusual for the lymph nodes near the centre of the chest to be affected first and from there the cancer can spread throughout the body’s circulation. TYPES OF LUNG CANCER As mentioned previously this is called metastatic disease. It is important to establish if any spread is present at diagnosis as this will help in deciding which treatment is best for you. The following symptoms are sometimes associated with lung cancer spread. • Frequent headaches. • Blurring of vision. • Pain in the bones, for example, ribs, shoulder, arms or legs. • Weakness/numbness in the legs. • Sickness (especially in morning). • Breathlessness resulting from fluid around the lung (pleural effusion). • Lumps in the neck or on the skin.

If you have any of the above symptoms please report them to your hospital doctor. Although, remember that many aches and pains will be nothing to do with having cancer.

?18 TREATMENTS FOR LUNG CANCER

What kind of treatments are available to me?

There are a variety of treatments used in the management of lung cancer. The main ones are: surgery, radiotherapy (x-ray treatment) and chemotherapy. Other therapies can also be used to help control symptoms.These will all be explained later on in the booklet.

How do the doctors decide what kind of treatment will work best for me?

Before doctors can decide what type of treatment will work best for you, they must consider a number of things, the most important of which is usually the “stage” of your cancer. The “stage” of any tumour is found using a number of tests and scans which look at the size, position and the extent of any spread of your cancer.

?19 Lung cancer staging Staging for lung cancer is a complicated process and is difficult to explain. Please don’t worry if you don’t fully understand the information on this page. Your doctor or lung cancer nurse specialist can go over it with you.

There are two ways that doctors can describe the extent of a lung cancer. One is to describe the “T”, “N” and “M” features of your cancer. The other is to describe your cancer in a larger category called its “Stage” group.

TNM staging looks at the following: • T (Tumour) the size and extent of the primary tumour – where the cancer first starts in the body. Can be: 0,1,2,3 or 4. • N (Nodes) which lymph nodes in the region are affected, if any. Can be: 0, 1, 2 or 3. • M (Metastasis) whether the cancer has spread to other parts of the body. Can be: 0, 1a or 1b.

The lower the numbers, the less advanced or smaller the cancer is.

Number staging divides the lung cancer into four stages: TREATMENTS FOR LUNG CANCER TREATMENTS • Stage 1 is small and hasn’t spread (localised). • Stages 2 or 3 is larger and may have spread into surrounding tissues. There may be cancer cells in the lymph nodes (locally advanced). • Stage 4 has spread to another part of the body (secondary or metastatic cancer).

Doctors can work out what number stage your cancer is by looking at your combination of TNM. As a general rule, the lower the number stage of a cancer, the less advanced the cancer is and the better the outlook (prognosis).

?20 TREATMENTS FOR LUNG CANCER

Will my general fitness or age affect the treatment I get offered?

Age is not a deciding factor, but the doctors do need to consider the following details:

Patient details Are the lungs If there is damage to the lungs from other illnesses, working for example emphysema, then certain treatments normally? may be ruled out as they could result in worsening of breathlessness.

Presence of The presence of other illnesses may make the risks other illnesses of certain treatments higher and this can alter a decision on which therapy is best.

Current Certain treatments require a reasonable level of symptoms fitness to reduce the risk of side-effects. If general fitness is reduced then these treatments may not be advisable.

Acceptability There may be side-effects of treatment that would of side-effects be unacceptable to some patients, for example, hair-loss. This should be discussed with the doctors before a decision on treatment is made.

Remember that everyone is treated as an individual, therefore, two people with lung cancer at the same stage may be cared for in different ways.

?21 I am a smoker, is it worthwhile trying to quit before I start my treatment?

Although most health care professionals will advise you to quit, they will recognise that this is a very individual choice. If you do stop smoking, you will improve your circulation and reduce the amount of poisonous chemicals in your body. Cleaner lungs may also help speed up your recovery from treatments, reduce the risk of the cancer returning and increase your chance of survival. Contact details of the NHS Smoking Helpline can be found at the back of the booklet.

Ask your doctor or nurse for advice on giving up smoking.

How long will I wait to receive treatment? Patients suitable for radical treatment, chemotherapy, radiotherapy or surgical treatment for symptom relief, should be treated without undue delay, according to Department of Health recommendations (within 31 days of the decision to treat and within 62 days of their urgent referral).

How will I cope with treatment?

TREATMENTS FOR LUNG CANCER TREATMENTS Coping with cancer can involve dealing with a wide variety of issues. Finding out about your treatment can be a helpful way to reduce many of your worries. While most of us find giving blood and injections difficult, it is not uncommon for some people to have intense fears or phobias related to these situations. Very often these difficulties have a long history and have been present before the diagnosis and start of treatment. Try to keep as relaxed as possible in the run up to each treatment. If, however, you find that you are experiencing problems, for example, anxiety or nausea, then discuss it with your doctor or nurse who can arrange help for you. ?22 TREATMENTS FOR LUNG CANCER Surgery for lung cancer How will it be decided if I am suitable for surgery? Successful surgery for lung cancer, with the chance of cure, may only be possible after the surgeon has considered the following points: • You and your lungs must be fit enough generally to cope with surgery. • Your tumour must not have spread to other parts of your body. • It must be technically possible to remove the tumour without damaging crucial structures in your chest. It is more common for non-small cell lung cancers to be surgically removed as they are generally slower growing. However, small cell lung cancer can occasionally be removed if the disease is at a very early stage of development. An experienced thoracic surgeon will always try to operate when at all possible.

How long will I have to wait to have my surgery? This varies from one hospital to another and sometimes depends on whether pre operative tests are required.

Will I need any other type of treatment along with the surgery? Some patients who have had their tumour completely removed should receive chemotherapy after their surgery. This will depend on the exact stage of the tumour found at operation. You should ask your surgeon about this. If the surgery has not completely removed the cancer you may be offered radiotherapy or chemotherapy treatment. Your doctor will fully discuss this with you.

?23 There are three main types of surgery for lung cancer:

• Segmentectomy/Wedge resection - Each lobe of the lung is made up of several segments. If your physical condition will not allow more extensive surgery, or the cancer is small the surgeon may be able to remove just a segment, or small piece of lung tissue, rather than the whole lobe.

• Lobectomy – This is performed when your cancer is confined to a single lobe of the lung. This procedure involves the removal of a lobe of the lung. The remaining lung will expand and fill the space left by the lung tissue that has been removed.

• Pneumonectomy – Involves removing a whole lung. The remaining lung will then need to work a bit harder but will soon become used to the workload. You will be able to do most things you did before, although some people find that they are unable to do demanding physical activity.

How does the surgeon get to my lungs? There are three main ways for the surgeon to get into the chest, either via keyhole surgery or by cuts called a thoracotomy or a median sternotomy. These are described below: TREATMENTS FOR LUNG CANCER TREATMENTS

• Thoracotomy - The name given to the incision (cut) that the surgeon makes around the side of your body, below your shoulder blade and between your ribs.

• Median sternotomy - The name given to an incision (cut) made vertically down the chest over the breastbone, which allows access to both the left and right side of the chest.

• VATS – Video Assisted Thoracoscopic Surgery (Keyhole Surgery): This is where your surgeon uses a camera through two or three small cuts (3- 5cm) into your chest to look at the lung. Incisions (cuts) are generally made under the arm and/or just below the shoulder blade.

The Roy Castle Lung Cancer Foundation has a more detailed booklet on surgery for lung cancer. Call 0800 358 7200 for your free copy. ?24 TREATMENTS FOR LUNG CANCER Chemotherapy for lung cancer My doctor has told me that I need chemotherapy. What does this mean? Chemotherapy is a general term for the treatment of cancer using drugs. Patients with different types of lung cancer are likely to receive different combinations of chemotherapy drugs. After discussing your treatment options with you, your doctor will decide which chemotherapy drugs are most suitable. Chemotherapy can be used for the following reasons: • Reduce symptoms, for example: breathlessness. • Extend length of life. • Shrink the cancer enough to allow further treatments, such as surgery or radiotherapy. Chemotherapy for small cell lung cancer If you have small cell lung cancer (SCLC), chemotherapy is usually the standard first treatment. As previously mentioned, SCLC cells grow quickly and can spread early (metastasise). Chemotherapy travels, in the bloodstream, and throughout most of your body. This usually leads to relief of symptoms and longer survival. If the cancer responds very well to this treatment then radiotherapy may be given as well to try to stop the cancer coming back (see Radiotherapy section). There are a variety of different types of chemotherapy drugs. The most common combination of chemotherapy drugs for people with SCLC contains platinum (cisplatin or carboplatin) and Etoposide. Other combinations that may be used, as further treatment after initial chemotherapy, include Cyclophosphamide, Doxorubicin, Vincristine and Topotecan. Chemotherapy for non-small cell lung cancer Chemotherapy can also be used to treat non-small cell lung cancer (NSCLC). If you are not suitable for surgery you will be offered either chemotherapy (if you are fit enough) on its own or in combination with radiotherapy (see radiotherapy section). If you have had surgery for lung cancer and all of the cancer cells have been removed, you may be offered chemotherapy. However, if you have had surgery and cancer cells remain, your doctor will discuss the advantages and disadvantages of chemotherapy with you. ?25 Chemotherapy for Non-small Cell Lung Cancer (continued) There are a variety of different types of chemotherapy drugs. The most commonly used chemotherapy for people with NSCLC contains platinum (cisplatin or carboplatin) mixed with one of the following drugs: Docetaxel, Gemcitabine, Paclitaxel, Pemetrexed and Vinorelbine. Treatment at relapse, after initial chemotherapy, can be given with further chemotherapy (Docetaxel, Pemetrexed). * Note that Pemetrexed and Gemcitabine are only licensed in combination with cisplatin in NSCLC. I am frightened of needles and feel sick at the thought of treatment - what should I do? It is not unusual to be frightened of needles and nursing staff have many ways of reducing your fears. Tell them if you are feeling nervous about needles before you start your treatment, as there are creams available to numb your skin. Some people feel sick at the thought of treatment, or perhaps the sight or smell of hospitals. This is called anticipatory nausea and vomiting and can be helped with a variety of methods including relaxation techniques, counselling and medication. Discuss your options with your treatment team. What actually happens when I get my chemotherapy? Some types of chemotherapy can be given at an out-patient clinic,

TREATMENTS FOR LUNG CANCER TREATMENTS whilst others require a short stay in hospital. Before receiving your chemotherapy “I expected to have to the doctors have to make sure that lie still in bed for the you don't have a higher than normal whole day, but actually, risk of developing side-effects. A even with the drip in, I blood sample will be taken to make was able to wander sure that your blood, kidneys and down to the day room liver are working normally. and watch telly.” Nearly all chemotherapy for lung cancer is given into a vein (intravenously), usually on the back of your hand or forearm. A small plastic needle (cannula) is put into the vein and attached to a drip. You will be given anti-sickness medicines into the drip before starting the chemotherapy. Once the chemotherapy is finished you will be given tablets to take home to prevent any sickness over the next few days. A few types of chemotherapy are available in tablet form. This still requires a visit to the out-patient clinic. ?26 TREATMENTS FOR LUNG CANCER

In general, the time in-between each treatment is three to four weeks. This is to allow your body to recover before giving more chemotherapy drugs. The doctors will assess your side-effects after each treatment and make adjustments to the next treatment as required.

I have heard that chemotherapy has very bad side-effects. Is this true and is there anything that can be done about them?

All forms of cancer treatment have side-effects of one sort or another. Chemotherapy drugs do have side-effects but these vary from one drug to another.

Most chemotherapy drugs work by stopping cells dividing and growing. Cancer cells divide very quickly and can be destroyed by chemotherapy drugs. Your blood will be checked regularly, to see if your white cells (cells that fight infection), haemoglobin (cells that carry oxygen), and platelets (cells that clot the blood) are normal. Most cells in your body will be affected by chemotherapy.

The following table overleaf contains practical advice on all of the more common side-effects that you may experience. However, it is important to remember that different chemotherapy drugs produce different side-effects and it is unlikely that you will experience all of them.

?27 Possible side-effects and practical advice

Tiredness This is normal. Although it is important to rest, a small amount of regular exercise will also help reduce your tiredness. If you feel breathless, your legs ache or you are concerned that you feel too tired, ask your GP or hospital team for advice.

Sickness and There are very powerful anti-sickness drugs, which nausea can help reduce sickness in most patients. Remember to take the tablets for sickness that the hospital has given you. If they don't work let your doctor know, as there is usually an alternative. The type of food that you eat or smell may make you feel worse. See diet section on page 30 for more practical tips.

Mouth ulcers Keep your mouth clean and fresh, with regular tooth/denture brushing. If your tongue becomes coated or you notice white spots or ulcers contact your GP or hospital for advice.

Hair loss and Although distressing, it is temporary and does not TREATMENTS FOR LUNG CANCER TREATMENTS thinning happen with all chemotherapy drugs. If you notice your hair starting to fall out, wear a hairnet at night and a hat/scarf during the day. Don't brush your hair too much or use hair colourants/rollers. Most hospitals will supply advice on how to get a good quality wig of your choice.

Infection It is important to realise that you are at higher risk than normal. Therefore, if anyone you know has an obvious infection (for example flu, chickenpox, shingles), it is best to stay away. Fever, feeling hot and cold flushes or starting to shake uncontrollably can all be signs of infection. Check your temperature with a thermometer and contact the number given to you by your hospital/GP for advice straight away. ?28 TREATMENTS FOR LUNG CANCER Possible side-effects and practical advice continued

Diarrhoea There are a variety of reasons why you might have diarrhoea, including infection and bad diet. However, if you have it for more than 24 hours, you should get medical advice. If possible try to drink plenty of liquid to prevent dehydration.

Constipation Try to drink more liquid (particularly fruit juice) and eat plenty of fruit, vegetables and fibre. If it becomes painful, contact your GP or hospital as they will be able to give you advice or medication that will help.

Bruising or Try to avoid bumping yourself. If you notice bruises bleeding or your nose bleeds then contact your GP or hospital for advice.

Taste change Quite common. See diet section on next page.

Tingling in You may feel pins and needles, a strange feeling in fingers/toes your fingers or toes, or notice a change in your or ringing hearing. This is not unusual, but you should tell in ears your doctor on your next visit.

Do the side-effects ease with time? Yes, usually they do ease with time, although in some patients they last longer or start later. If you are going to feel sick it is usually within the first week after treatment. White blood cells and platelets reach their lowest point 10-15 days after treatment. Often the only sign that this has happened is a feeling of tiredness when even the smallest task feels like a great chore. This is also the time when you are most at risk of picking up infections. In general side-effects usually begin to reduce by the third week after chemotherapy and you should start to feel better. This is your body recovering in time for the next treatment. Unfortunately, some side-effects, for example, tiredness, bad taste in the mouth and tingling in the fingers and toes, may continue for some time after treatment. ?29 Should I change my diet while I'm having chemotherapy? It is quite common to lose your appetite while having chemotherapy and your sense of taste may also be affected. You could find that you have a metallic taste in your mouth or perhaps no taste at all. However, if you are concerned that you are not eating or drinking enough tell your doctor, as there are dietary supplements available on prescription.

The following tips may help to make foods taste better: • Only eat foods that you like the taste of and avoid the ones that you don't like. • Try different new foods that you haven't had before. • Herbs and seasonings will help to add flavour to your food. • Marinating food before cooking may help improve flavour, as may pickles and sauces to cold meats. • Sharp tasting foods such as fruit juices, pineapple and grapefruit will leave a refreshing taste in your mouth. • Fizzy drinks or lemon (or other fruit) teas may provide a pleasant tasting change from tea and coffee. • Cold food sometimes tastes better than hot food. • Avoid strong smelling and fried foods. • Eat small meals and snacks regularly throughout the day, rather than large ones only at meal times. • Avoid drinking too much liquid before eating, as this will fill you up. TREATMENTS FOR LUNG CANCER TREATMENTS

How do the doctors know if the chemotherapy is working? It can be difficult to measure exactly how well it is working, although usually an assessment will be made at some point during your treatment (usually after two-three courses of chemotherapy). Usually this will be done by chest x-ray and/or CT scan. If your symptoms have improved this may also suggest that the treatment is working, for example, less cough or breathlessness. If there is evidence that your cancer is responding to the chemotherapy then treatment will continue (as long as you are not having side-effects which are intolerable). If there is evidence that your cancer is not responding then it is important to know this, so that a decision on an alternative treatment can be made. Sometimes there will be no change in the state of your tumour when the x-ray or scan has been done. This may seem disappointing but is a worthwhile response, especially if you feel better. Even if the chemotherapy has not changed the size of the ?30 tumour, it may well have delayed the growth. TREATMENTS FOR LUNG CANCER Radiotherapy for lung cancer

My doctor has told me that I need radiotherapy. What does this mean? Radiotherapy is a general term for the treatment of cancer with x-rays. It works by killing cancer cells and is often used on its own to treat lung cancer. It may also be given as part of a combined treatment with surgery and/or chemotherapy. It is usually given from outside the chest (external radiotherapy) by directing x-rays at the area needing treatment. The machines that are most commonly used for this are called linear accelerators. However, radiotherapy can also be given by putting a small amount of radiation directly inside the lung (brachytherapy). Your Clinical Oncologist (a cancer doctor with special expertise in radiotherapy) will know which treatment is best for you. The following information in this section is referring to external radiotherapy. Radiotherapy is only given in specialist cancer centres because the treatment is very specialised and expensive. This may involve long journeys to get to your nearest cancer centre, depending on where you live.

?31 Why is radiotherapy used to treat lung cancer?

Radiotherapy has always been an effective treatment for lung cancer. It is the most common treatment used for non-small cell lung cancers, as in general they are slow growing tumours. Small cell lung cancer can also be treated with radiotherapy, when chemotherapy is not suitable or is complete. Radiotherapy can also be particularly helpful for treating lung cancer that has spread outside of the lungs, for example, bones (metastatic disease). The table below describes the types of radiotherapy available and why they are prescribed: Radiotherapy Why is it given? How is it given? Radical To try to cure lung Daily treatments, at a cancer which is not cancer centre. suitable for surgery. Usually given over a The cancer must be period of around four small enough and in a weeks. suitable position so that the radiotherapy beam can totally surround it.

TREATMENTS FOR LUNG CANCER TREATMENTS Continuous A shorter, more Three treatments a Hyperfractionated intensive way of day, over 12 days, at Accelerated giving radiotherapy a cancer centre. Radiotherapy which involves staying (CHART) in hospital.

Palliative To shrink the tumour Usually daily and help reduce treatments, for a symptoms such as short length of time. cough, pain and The amount needed breathlessness when varies from 1-15. lung cancer is not curable. Also commonly used in treatment of lung cancer spread to the brain. ?32 TREATMENTS FOR LUNG CANCER Radiotherapy Why is it given? How is it given? Prophylactic Cranial To reduce the chance Daily treatments, Irradiation (PCI) of disease spreading usually over around 10 to the brain after a days. complete or good response to chemotherapy (only recommended in small-cell lung cancer).

Consolidation To reduce the chance Daily treatments, of the cancer in the usually over around lung growing again for three weeks. SCLC patients who have had a good response to chemotherapy. There are currently clinical trials underway to find out if chemotherapy and radiotherapy work better when given at the same time (concurrent) or one after the other (sequential).

How will the doctors know how many treatments I need? Your doctor will look at your test results, the type of tumour you have, where it is and whether it has spread. All this information will be carefully considered before the doctor decides how many treatments you need. This is called treatment planning and may involve:

• CT Planning Scan - This is a special type of scan where a number of pictures are taken. It helps your doctor to plan your radiotherapy treatment accurately. • Simulator - The simulator is a special x-ray machine similar to the radiotherapy treatment machine and is used to plan the treatment to ensure that only the area that needs treatment will actually be treated.

Your treatment may be planned using either or both of these, and sometimes it may take several visits before your treatment is ready to start. ?33 Is receiving radiotherapy treatment painful?

No, the treatment itself is “I was terrified when I first totally painless, although went for radiotherapy, but you may find the treatment it wasn’t such an ordeal table hard and slightly and it didn’t hurt at all.” uncomfortable.

How do the doctors know if the radiotherapy is working? It is sometimes difficult to know immediately whether there has been a response, because the treatment itself can cause changes to the lungs. However, in time the response will become clearer, at which time repeat measurements from initial tests may help to establish if there is any change.

Should I change my diet during radiotherapy? Try to maintain a healthy diet, but avoid very hot drinks, rough foods and strong spices, particularly if your gullet has become irritated. Try mashing foods or adding additional sauces/gravies - if swallowing is

TREATMENTS FOR LUNG CANCER TREATMENTS still difficult liquidise your food to remove any lumps. If you experience a burning feeling in your gullet, drinking alcohol, especially spirits, may make it worse. Cutting back will help if you feel you cannot cut it out completely.

Are there any side-effects of radiotherapy? Yes, although they vary from person to person depending on the type of treatment you have and your general fitness. Some of the more common side-effects are shown in the following table.

Possible side-effects Practical advice Some pain in the chest This is usually mild and settles down fairly in the 24 hours after quickly. Use an “over-the-counter” the first treatment. painkiller and if this does not work speak to your GP. ?34 TREATMENTS FOR LUNG CANCER Possible side-effects Practical advice Skin in the treated You may bathe or shower during treatment, area becomes a little but do not have the water too hot. Use mild pink or red. It may baby soap, but try not to rub the treated area also feel a little dry particularly if it is red or itchy. It's best to pat or itchy. the area dry with a soft towel. Avoid perfumed talcum powder or lotion.

Soreness when There are soothing liquid medicines which can swallowing due to be prescribed by your doctor. However, you the gullet may find cool/luke warm drinks or ice-cream (oesophagus) soothing. Eat food that is soft or mushy, for becoming irritated by example, porridge or soup. the treatment.

Increase in your Don’t worry, this is quite normal, but if you cough and sputum are having difficulties with it let your doctor (spit). know.

Tiredness following This can last for a number of weeks after treatment. treatment has ended. Make sure that you take it easy and rest when you feel tired.

Scarring of the lung You might notice a slight increase in (fibrosis). breathlessness. If this becomes a problem, see your hospital doctor or GP, as there are medicines and breathing exercises which can help.

Spinal cord/heart As the treatment is often close to these areas damage. there is a very rare chance they may be damaged.

How will I feel after treatment ends? The effects of the treatment should wear off after several weeks - however tiredness can take a little longer. Your radiotherapy doctor will arrange to see you a month or so after treatment is complete. It is important to assess how well your treatment is working and to ensure that you are not experiencing any other problems. ?35 Other treatments for lung cancer

Are there any other treatments used for lung cancer? Yes, there are a variety of other therapies which can sometimes be used to treat lung cancer. Some of the therapies mentioned below are very new and their role in the treatment of lung cancer is still being researched. Because of this, not all of these treatments are available in every cancer unit. Ask your doctor if any of the following therapies may be suitable for you:

Biological/Targeted therapies This is a new type of treatment for lung cancer using drugs that stop the growth and spread of cancer. Targeted therapies are also sometimes known as biological therapies. There are several types of these therapies including: monoclonal antibodies and cancer growth inhibitors. These drugs work by interfering with cancer cell growth in different ways. This can stop the development, growth and spread of the cancer. Unlike other cancer treatments, targeted therapies don’t harm normal, healthy cells.

TREATMENTS FOR LUNG CANCER TREATMENTS Currently there are three targeted therapies licensed for the treatment of lung cancer in Europe: Bevacizumab (Avastin), Erlotinib (Tarceva) and Gefitinib (Iressa). The use of targeted therapies for lung cancer is continually developing. Doctors are currently researching to find out how different targeted therapies can be used best to treat lung cancer.

Endobronchial therapies Brachytherapy, stenting, cryotherapy, electrocautery and laser therapy are most commonly used to unblock/clear an airway. This can help to reduce breathlessness. Occasionally they may be used to try to cure an early stage lung cancer.

?36 TREATMENTS FOR LUNG CANCER

Pleural Drainage/Pleurodesis Sometimes lung cancer tumours cause fluid to build up in and around your lung. Pleural drainage is done to reduce the amount of fluid in your lungs. If this treatment is successful talc may be injected into your lung (pleurodesis) to stop a further build-up of fluid.

Radiofrequency Ablation (RFA) This is a very new and experimental treatment which uses radio waves to heat up and destroy small tumours. It is occasionally used as an alternative to some types of surgery for lung cancer. Doctors are currently researching to find out how RFA can be used best to treat lung cancer.

Vaccines Synthetic lung cancer vaccines are a new type of treatment doctors are testing. This type of treatment is only available in clinical trials. Lung cancer vaccines are still generally not proven.

?37 Clinical trials

I have been asked by my doctor to take part in a clinical trial. What does this mean? When doctors are uncertain about whether one type of chemotherapy is better than another, or if a new treatment/drug mixture is likely to work or have side-effects, they try to answer this by involving patients in clinical trials. Most of the information that doctors have about how well different drugs work is obtained in this way.

During a clinical trial detailed information is collected about each patient, drug side-effects and how well the treatment has worked. When this information is collected and compared from all the patients in your trial, it should become clear how good the treatment is. Without clinical trials it would be very difficult to know which cancer drugs work best.

How do I know that clinical trials are safe? All clinical trials have to be passed by a committee of doctors and members of the public before they begin. Involvement in a

TREATMENTS FOR LUNG CANCER TREATMENTS clinical trial is completely voluntary. If you decide that you want to stop being involved in a trial, then you simply have to tell your doctor. This will not affect your chances of future treatment if other options are available.

Where do clinical trials take place? Trials take place in a variety of locations including cancer centres and district hospitals. If you are interested in discussing clinical trials, then ask your cancer doctor for further information on what trials are available in your area. Cancer Research UK can also provide details of clinical trials, which are taking place throughout the country. For further information contact them on: 0808 800 4040.

?38 TREATMENTS FOR LUNG CANCER

Are there different types of clinical trial?

Yes, there are four different types of clinical trial, which are detailed below.

Phase 1 A Phase 1 trial of a new drug, or mixture of drugs, is available if your cancer has returned despite having previous treatment, or there is no effective standard treatment available. If a new drug has been shown to work well in laboratory experiments and animal tests, it is important to know whether it also works well for humans, without causing too many side-effects. This usually involves weekly visits (sometimes more often) to the hospital to measure blood counts and assess side effects. You may like the close attention received during the visits but it can be disruptive to normal social and family activities.

The dose of drug is increased with each new group of patients (usually three in each group). The higher the dose, the more likely side-effects are to occur, however there may also be a greater chance of response.

Phase 2 If results of a Phase 1 study show that a drug/treatment may be effective, without causing too many side-effects, then the next step is to a Phase II trial. This will examine how well a particular drug works for a certain type of cancer.

The dose that you are given remains the same throughout the trial.

Phase 3 If a treatment has successfully passed through Phase 1 and 2 a Phase 3 trial is performed. This compares two different forms of treatment; usually the new treatment against the standard treatment.

Phase 3 trials involve a larger number of patients than 1 and 2, often involving hundreds of patients and taking many years to complete.

Phase 4 Phase 4 trials are done after a drug has been shown to work and has been given a license. Doctors do these trials to increase understanding of how a drug works and who it works best for. ? ?39 Complementary therapies

What are complementary therapies? Sometimes also known as alternative therapies, they may help to control your symptoms and enhance your quality of life. Complementary therapies may be used alongside conventional cancer treatments such as surgery, radiotherapy, and chemotherapy. They work using the healing power of nature and stimulating the body's natural healing ability. They aim to treat the whole person including the physical, spiritual and social being. However, it is important to stress that although you may find complementary therapies very helpful in reducing symptoms such as pain, there is no conclusive scientific evidence which proves that such treatments can cure cancer.

There are a huge variety of complementary therapies advertised on the open market, many are well known and have been proven to be helpful. However, there are also some therapies that are expensive and have doubtful benefits. Be very wary of unusual and often costly therapies advertised in the media such as the internet, or newspaper adverts. If you are in any doubt discuss with your GP or hospital team

TREATMENTS FOR LUNG CANCER TREATMENTS whether it may be of any particular benefit to you. You may find that your hospital or GP has an alternative therapy service available.

Note: It is important to also check with your doctor before starting any complementary therapy, as it may interfere with some treatments or other medication you may be taking.

?40 TREATMENTS FOR LUNG CANCER

Could you explain how complementary therapies work? Yes, below is a table explaining some of the more popular complementary therapies.

Therapy Explanation Acupuncture Part of a system of Chinese medicine, which depends on the balanced functioning of the body's energies and involves very fine needles being inserted at specific points of the body's surface.

Aromatherapy Uses massage and inhalations combined with essential plant oils, to promote health and healing of the whole body.

Bowen A light tissue manipulation thought to help balance technique the body’s energies.

Counselling Provides support, help and an understanding listener for someone who is anxious, troubled or distressed.

Spiritual Channels healing energy from its spiritual source healing to the patient through the healer's hands.

Hypnotherapy Uses the hypnotic state to overcome limitations by controlling the body and mind.

Massage Uses gentle to vigorous contact to stimulate the blood flow around the body, helping a person to relax.

Reflexology A form of ancient Chinese medicine involving treatment using massage to reflex areas found in the feet and the hands.

Reiki Uses life energy being passed by gentle, unintrusive touch, through the practitioner to the person receiving this relaxation treatment.

?41 ? 42 IF YOU’RE NOT HAPPY WITH YOUR CARE harm thecare thatyoureceive. It isimportant torememberthatcomplaining shouldinno way Freephone: 08009170222 (NI) Northern IrelandHealth andSocialServicesCouncils. Tel: 01656641150(Wales) Public ServicesOmbudsman. Tel: 0345 0154033(England) Parliamentary andHealthService. Freephone: 08003777330(Scotland) Scottish PublicServicesOmbudsman. varies dependingwhereintheUKyoulive: the righttoaskforanindependentreview. Whoyoushouldcontact If youarenothappywiththeoutcomeofyour complaint, youhave Referral totheOmbudsmanforindependentreview in writing. keep arecordofcomplaintandyoucandothismoreeasilyifitis response fromtheChiefExecutivewithin25days.Itisimportantto hospital’s ComplaintsManager. Thiswayyouareguaranteed a with yourtreatmentthenyoucantelephone,email,orwritetothe away. Ifyoudon’twanttotalksomeonewhoisdirectlyinvolved of yourcomplaint.Theymaybeabletoaddresstheproblemstraight If possible,tellahealthprofessional,forexample,doctorornurse, The majorityofcomplaintscanbeefficientlydealtwithinthisway. Local resolution Referral totheOmbudsmanforindependentreview. • Localresolution. • There aretwostagestotheNHShospitalcomplaintsprocedure: for you(probablyarelativeorclosefriend). complain yourself,withyourpermission,someoneelsecan have received,youtherighttocomplain.Ifareunable If youarenothappywiththehospitaltreatmentreceiving,or I'm nothappywithmycare,howdoIcomplain?

43

LUNG CANCER HEALTH PROFESSIONALS ?

re-referred. reason why, then you should ask your GP for support in being then you should reason why, If you are not referred to a specialist and are not happy with the If you are not referred to a specialist results and decided that surgery is not possible. results and decided that surgery could be that the thoracic surgeon has already looked at your test could be that the thoracic surgeon referred to a thoracic surgeon or an oncologist. For example, it referred to a thoracic surgeon or ask why. There are several valid reasons why you may not be There are several ask why. on to either a thoracic surgeon or an oncologist, then you should on to either a thoracic surgeon cancer. If the first hospital doctor that you see does not refer you If the first hospital doctor that cancer. you should check that the doctor is a specialist in treating lung that the doctor is a specialist you should check This depends on which type of treatment is best for you. However, which type of treatment is best This depends on who will give me the best treatment? who will give How can I make sure that I'm seeing the doctor sure that I'm seeing How can I make may be involved in your care. may be involved The table on the next page explains the role of each person who next page explains the role of The table on the specialising in lung cancer and a thoracic (chest) surgeon. and a thoracic in lung cancer specialising often include a chest physician, an oncologist (cancer doctor) (cancer an oncologist a chest physician, often include vary depending on where you are getting treated, but will most treated, but you are getting on where vary depending should be involved in your care. The exact make up of the team will make up of care. The exact involved in your should be A multi-professional team made up of various health professionals health of various up team made A multi-professional Who might be involved in my treatment and care? and treatment in my be involved might Who ? 44 LUNG CANCER HEALTH PROFESSIONALS patients Role ofeachpersoninvolvedinthecarelungcancer nurse specialist Lung cancerclinical District nurse Dietitian physician Chest/respiratory Howtheycan help Clinical psychologist Profession Can becontacteddirectly. and supporttopatientstheirfamilies. Offers specialistlungcancerinformation between youandyourGP. changing wounddressings.Isalsoacontact keeping andprovidepracticalhelpsuchas Visits youathome,toassesshoware supplements. assess yourneedforanydietaryorvitamin carers aboutbalanceddiets.Canalso Provides expertadvicetopatientsand journey. co-ordinates thefirstpartofyourcancer cancer. Alsooftenthedoctorwho chest x-rayswithaviewtodiagnosinglung Performs testssuchasbronchoscopiesand problems. as: anxiety, depressionandrelationship Helps withawidevarietyofproblems,such 45

LUNG CANCER HEALTH PROFESSIONALS ? Provides advice in adapting your lifestyle in adapting advice Provides energy whilst to saving your with a view advise on active. Can also still being you or alterations to equipment to help your home. expertise in the non-surgical Provides including treatment of cancer radiotherapy. chemotherapy and or improve your Helps you to maintain technique. mobility and breathing Advises and helps with benefits/welfare and rights, homecare, daycare, childcare family relationships. on Administers and provides information radiotherapy treatments. the chest, including surgery to Performs staging. removal of part or whole lung and

Occupational therapist Occupational Profession How they can help Oncologist (cancer doctor) Physiotherapist Social worker radiographer Therapy surgeon Thoracic (chest surgeon)

patients Role of each person involved in the care of lung cancer lung care of in the involved person of each Role Managing everyday activities Will tiredness (fatigue) affect my ability to carry out everyday activities? You may find that at times, particularly during periods of treatment, you feel more tired than usual. Some people also experience periods of breathlessness when carrying out more strenuous activities. You may need to adapt your everyday activities to help overcome this. When necessary your doctor will also provide medication or treatment to reduce this problem. What kind of changes may I need to make? When activities are carried out in the easiest, most efficient way, less strength is used and tiredness or pain is prevented. This means that you will have more time and energy to cope with other activities during the day. There are some simple guidelines that can help you cope with any difficulties you may experience. Try to remember the following three "Ps": Prioritise - In order to have more energy to do the things you want to do, try to prioritise by deciding what is most important to you. This may vary from day to

LIVING WITH LUNG CANCER day. Try to cut out unnecessary jobs or perhaps leave some of the heavier tasks for friends or family. Plan ahead - Forward planning can help you achieve what you want to do without over-tiring yourself. Think ahead when planning outings, for example give yourself extra time when going to an appointment or choose a restaurant that has convenient parking. This will help you to feel more relaxed and able to enjoy your outing. Pace yourself during the day by balancing periods of activity with periods of rest. Sit down for as many activities as possible. Try to take a break before you need it and remember that many short rest periods are better than a few long ones. Try to use slow, relaxed movements and avoid rushing and getting flustered. What sort of activities may I find more tiring? Usually you will find that more physically demanding activities, for example, climbing stairs, gardening, shopping or perhaps bathing/showering, are more tiring. There is equipment that can help you remain independent and reduce the energy required to carry out activities, for example: • Use a stool to sit on when gardening. • Check your bed and chairs are high enough for you to get on/off easily. ?46 LIVING WITH LUNG CANCER • A high toilet seat can be ordered if your toilet is too low. • A grab-rail beside the bath, shower or toilet will help you steady yourself. Ask your occupational therapist for advice on the above.

Will I still be able to get out and about? Yes, but remember to think ahead when planning an evening or day out. If you are going somewhere unfamiliar, try to get information in advance, for example, make sure that lifts and parking/transport facilities are nearby. If you find yourself getting fairly tired on longer walks, having access to a wheelchair for occasional use may be helpful. Many shopping centres and supermarkets have wheelchairs available and short-term loans may be available through your local Red Cross or hospital service. You may also be entitled to a disabled badge for parking the car - check with your local Social Work Department. If you are travelling long distances by rail or air, advise the operator when booking your seats as additional help is often available to you. You will need travel insurance when travelling abroad. This can often be expensive and it is advisable to shop around for the best deal (it is usually cheaper six months after completion of last treatment). Ask your GP for advice if you are travelling with drugs, particularly morphine. A free Health Advice for Travellers booklet is available over the counter at post offices or by calling the Department of Health Publications Order Line on 0300 123 1002. If you are looking information about getting Travel Insurance, please call the Roy Castle Lung Cancer Helpline on 0800 358 7200.

Will my sexual feelings be affected? It is not uncommon for some people to find that possibly as a result of being tired, or a feeling of being less sexually attractive, sexual interest may temporarily decrease. Furthermore, your partner may sometimes be concerned, very often wrongly, about the possibility of hurting or stressing you. If you have concerns about this, it may help to discuss them with your partner or hospital staff. It may be helpful to temporarily replace sexual activity with non-sexual contact such as holding hands, hugging or kissing for a while, if sexual interest is low. ?47 Financial help Am I entitled to any benefits? The benefits system can be confusing, especially if you have never been in a position before of needing to claim. A variety of financial help is available for people affected by lung cancer. You may be able to claim some of the following benefits: Name of benefit Can I claim it? Statutory Sick Pay Must earn at least £97 per week before tax and national insurance. Can be paid for up to 28 weeks. Disability Living Allowance There are two parts to this benefit: (must start claim before 65 years old) Care Component Must have needed help for three months due to severe illness and are likely to need it for at least a further six months. The benefit you receive depends on the amount of care that you need.

LIVING WITH LUNG CANCER Mobility Component Must be unable to walk or only able to (Higher Rate) walk a short distance before you feel severe discomfort. Special Rules If you are terminally ill, you can apply for Disability Living Allowance under the Special Rules. You do not need to meet the three and six month qualifying conditions. Your claim will be dealt with quickly and you will receive the benefit at the higher rate. Attendance Allowance Must have needed help for at least six (over 65 years old) months due illness or disability. Not affected by savings or income. Carers Allowance Must spend at least 35 hours per week caring for a relative or friend, and earn less than £100 per week. Not affected by savings, although person being cared for must be receiving either Disability Living Allowance or Attendance Allowance at middle or high rate.

?48 LIVING WITH LUNG CANCER Name of benefit Can I claim it? Employment Support This new benefit replaces Incapacity Benefit and Allowance Income Support paid on the grounds of incapacity. There are two types of entitlement: contributions based and income based. You may be entitled to either or both depending on your national insurance contributions and income/savings. Working Tax Credit Must qualify for Working Tax Credit, work at least (disability element) 16 hours per week, and have an illness or disability which puts you at a disadvantage from getting a job. Blue Badge Parking Must receive the higher rate of the Scheme Mobility Component of the Disability Living Allowance or have (permanent) considerable difficulty in walking. Ask your GP or contact your local council for an application form. Motability Scheme Must receive the higher rate of the Mobility (can help you with Component of the Disability Living Allowance. leasing/buying a car)

Please note that the rates mentioned in the above benefits table are accurate at the time this booklet went to print (October 2010) and will change at least annually. You apply for each benefit by completing a special form. There is a different form for each type of benefit, all of which you can get by phoning the Benefit Enquiry Line on: 0800 88 22 00. In addition to benefits you may also be able to get help with paying your rent and/or Council Tax. You may be entitled if you are either working and have low earnings, or if you are not working and have a low income, pension and/or benefits. Contact your local council for information on how to claim. You may also be able to get help with prescriptions, dental treatment, spectacles and the cost of travelling to and from hospital. Other organisations may also provide financial help for a wide range of items, such as telephone installation and holidays. It is best to get advice from a social worker or your lung cancer nurse specialist about which benefits you can apply for. You can also get help with completing the forms from your local Citizens Advice Bureau.

?49 ? 50 LIVING WITH LUNG CANCER Life afterlungcancer What willlifebelikeaftertreatment? that manyacheshavenothingtodowithcancer. important todiscussanyconcernswithyourdoctorandremindyourself pain maytriggerworriesthatyourcancerhascomeback.Itis this concernmaybecomepartofeverydaylife.Often,anewacheor people whohavebeendiagnosedandtreatedforcancer, reportthat It isalsonormaltobeconcernedaboutyourcancerreturning.Many working hours/daysorlessphysically/emotionallydemandingworkload. are abletoarrangeamoreflexibleworkingarrangement,suchasfewer may feelunabletoreturntheworktheydidpreviously. Somepeople Many peoplegobacktoworksoonaftertreatmentends,whilstothers comes, theneachweek,monthandyearafterthat. working upwards.Itcanbehelpfultobeginbytakingeachdayasit your prioritiesandstartbysettingyourselfsmallachievablegoals, to moveonwithlife.Itmaybehelpfultrythinkingcarefullyabout You maybeconfidentthatyourcancerhasbeentreatedandfeelable other patients. as itoftenmeansthatyouwillhavelesscontactwithhospitalstaffand start totrygetlifebacknormal.Othersfindthisadifficulttime Many peoplelookforwardtotheendoftheirtreatmentastheycan LIVING WITH LUNG CANCER If your lung cancer can’t be cured Supportive and palliative care I've been told that my cancer can't be treated- how will I cope? Unfortunately, for many different medical reasons, “I’m living to often people can never be cured of lung cancer. This will be an exceptionally difficult time for you live, and not and your family. Many people become preoccupied living to die.” with thoughts about treatments and why there is no curative treatment suitable for them. It is common to experience blame and anger. All patients should have access to both community and hospital based palliative care teams. Remember, even though your cancer can't be cured you may be able to live with your disease, enjoying a good quality of life. If you have questions about your treatment, do not hesitate to discuss them with your doctor or specialist nurse. There are many professionals who will be able to help you and your carers through this difficult time. My doctor has referred me to the palliative care team. What does this mean? The palliative care team is usually made up of medical and nursing staff with special skills in pain control and symptom management. They work in a variety of settings including hospitals, the community, and in specialist units such as hospices. The main purpose of the palliative care team is to make sure that you are comfortable and ensure the best possible quality of life for both you and your family. Will the palliative care nurse come to visit me at home? Yes, the palliative care nurse works closely with your GP and district nurse to ensure that you get the best possible care and support in your own home. This will mean that you have easier access to a greater number of specialist services that may include day care, in-patient care and pain or breathlessness clinics. These services are to complement, not replace, the support given to you at home. If you have not been offered this service and would like a palliative care nurse to visit you, speak to your GP, hospital doctor or specialist nurse. ?51 Is there any help available if I need nursing during the night? Yes, this service is usually provided by agencies such as Marie Curie Cancer Care. These nurses can stay with you overnight to give physical/emotional support. This may also allow your carer some time to rest. Speak to your district nurse or GP to find out who provides this service in your area.

Will I become very short of breath? Many people with lung cancer become breathless. This can be a very frightening sensation and it is understandable if you feel panicky. However, there are some ways in which you can help yourself, such as opening a window or using a fan. Your doctor or nurse may refer you to a breathlessness clinic, physiotherapist or occupational therapist who will help you learn some relaxation techniques. If necessary your doctor may also prescribe medicine to help calm and relax you.

The Roy Castle Lung Cancer Foundation has a useful booklet called

LIVING WITH LUNG CANCER Lung Cancer - A Practical Guide to Breathlessness. Call 0800 358 7200 for your free copy.

Am I going to have a lot of pain? Not necessarily. However, if you do have pain “If you’re having then it will be controlled by using a variety of different treatments. These may include: a good day, enjoy palliative chemotherapy/radiotherapy, as well it and if you’re as strong medicines or perhaps complementary having a bad day, therapies such as acupuncture. It is important think of the good to tell your doctor or nurse if you are experiencing any pain. days.”

Will I have to take morphine? You might feel frightened about taking morphine as it is sometimes thought of as being linked to death and addiction. This is not true - it is a very useful painkiller and can also help reduce breathlessness. You should still be able to carry out most day to day activities such as driving. However, morphine can at times make you drowsy, especially when you first start taking it. Do not drive if you feel at all drowsy. ?52 LIVING WITH LUNG CANCER

Should I plan for the future? For many people, a diagnosis of lung cancer may mean that life will never be the same again. Remember, death is an inevitable end result for all of us, but something which we rarely consider. You may find that for the first time in your life you start to think about what the future holds and the possibility of death. Many people find it helpful to get things in order. These issues can be very difficult to consider. However, you might find that making plans and discussing them with your family and friends can be helpful in "clearing the decks" and allowing you to “My cancer get on with living. can’t be cured Being told that you have a terminal but I’m still disease may provide an opportunity to plan living life to the for death in a way that someone who dies suddenly is unable to. full. I’m just back from a If you would like to make a will, but are relaxing holiday unsure of how to go about it, call in the sun.” The Roy Castle Lung Cancer Foundation on 0800 358 7200, for a free will guide.

How do I find out how much time I have left? The truthful answer is that nobody really knows. It depends on many factors, such as, what type of lung cancer you have and how well the cancer responds to palliative treatment. Based on their past experience, doctors can sometimes make an estimate. However, doctors can often get this wrong.

Can I choose where I die? Help and advice will be given for you to plan for death in the place of your choice. It is possible for care and support to be given at home, in hospital or in a hospice. It is important that you discuss your wishes with your family and all those involved in your care.

?53 Anaesthetic Chemotherapy The use of a drug either locally This is drug therapy usually to numb an area or generally to targeting small cell lung cancer. put someone to sleep. It may be given in the form of tablets or more likely by injection. Benign This is a growth, which although abnormal in the body, is not a Curative cancer. Although it may grow This is a word used by doctors and spread locally, it does not when they believe that the metastasise or spread to other treatment they are going to give areas of the body. you is going to take away all the cancer and therefore cure you of the disease. Although it is

GLOSSARY OF TERMS GLOSSARY Biopsy impossible to tell immediately This is the removal of a small after treatment whether you portion of tissue usually from have been cured or not, the the lung but may also be from doctor will be able to tell you the liver, skin or other areas, whether the treatment you are which is then viewed under a going to receive is likely to microscope. result in a cure.

Cancer Growth The term given for a growth This is another name for a which is out of the body's tumour. Both growths and normal control. Cancers tend to tumours can be benign or spread either locally, i.e. within malignant. Sometimes a doctor the lung or may spread to other may use the term tumour or areas. growth because they are trying to avoid using the word cancer. It is important then that you ask Cannula whether this growth or tumour This is the needle or very fine is benign or malignant. tube that is inserted into a blood vessel in the hand or the arm in order to deliver drugs.

?54 55

GLOSSARY OF TERMS ?

Pleural effusion effusion Pleural that collects is fluid This its lining. lung and the between the may result in This fluid expand being able to chest not at it would do as easily make you This can normally. breath. It is detected short of over your by the doctor tapping and then chest with his hands confirmed by listening and is the use of an x-ray. Prognosis of the This is the prediction and outcome of probable course the disease. Staging These are medical tests to establish the extent of a cancer.

that patients may experience. relieve some of the symptoms treatment such as painkillers, to radiotherapy or it may be drug including chemotherapy or treatment takes many forms will not cure you. Palliative although will help your cancer, receive from the doctor which This is treatment that you may Palliative involved in your care. professionals who may be the different health A term used to describe all of Multidisciplinary team (MDT) were in the lung, into the brain. were in the lung, a spread of the same cells that a spread of the is not a brain cancer but simply is not a brain cancer be called a brain metastasis. It be called a brain spread to the brain and this will spread to the brain example, a lung cancer may example, a lung where a cancer has spread. For where a cancer These are the areas of the body These are the areas Metastases locally and to distant areas. locally and the potential to spread both to spread the potential normal control and that it has and that normal control that the growth is not under that the malignant describes the fact describes malignant This is a cancer. The word is a cancer. This Malignant Malignant The Roy Castle Lung Cancer Foundation is the only charity in the UK wholly dedicated to the defeat of lung cancer. We offer a range of information and support services to people affected by lung cancer which may be of interest to you or your family:

Helpline: If you have questions about lung cancer, we are here to help. Our freephone Helpline provides information on lung cancer, lung cancer treatments and can provide information on what support services might be available to you locally. The Helpline is open Monday to Thursday 9am to 5pm and Fridays 9am to 4pm and the number is 0800 358 7200. Please note calls are free of charge from UK landlines but mobile phone charges may vary.

Support: You might prefer to

HOW WE CAN HELP? access support face to face, or you prefer to go online from the comfort of your own home. The Roy Castle Lung Cancer Foundation has a network of affiliated support groups across the UK. These groups meet regularly and are led by a local Clinical Nurse Specialist. The groups aim to provide you with the opportunity to meet other people affected by lung cancer, get support through sharing experiences and learn more about lung cancer and looking after yourself. If you would like to know more about going along to a support group, ring our Helpline on 0800 358 7200 or go to our web site at www.roycastle.org.

We also have discussion forums on our website where you can log on and ask questions, share knowledge and experiences, exchange ideas and get support from other forum users. To visit our forums, go to www.roycastle.org and click on ‘Online community’.

?56 Information: We are able to provide information on lung cancer online, HOW WE CAN HELP? in print and on DVDs.

Our free booklets and factsheets cover information about lung cancer, lung cancer treatments and living with the disease. You can see the full range of our publications on our web site at www.roycastle.org or telephone our freephone Helpline on 0800 358 7200 to order booklets.

We also have a DVD on living with lung cancer which is free and can be ordered through our freephone Helpline on 0800 358 7200. You can also view the chapters from this DVD on our website. Each chapter is around ten minutes long and covers topics such as diagnosis, managing symptoms and side effects, what to expect with different treatments, emotions and relationships; and practical issues such as financial support and managing your diet. To view online go to www.roycastle.org and click on Get Support.

Getting Involved: Many people who have been affected by lung cancer feel that they want to raise other people’s awareness of the disease. Others may feel that they had a particularly good or bad experience of treatment and care and want to get involved with improving services for other people affected by lung cancer. At The Roy Castle Lung Cancer Foundation, we support a UK wide network of people who have been affected by lung cancer and who want to use their experience to improve the situation for others affected by lung cancer. Your views and experiences help shape our services, campaigns and how treatment and care is delivered. There are lots of different ways of getting involved – if you are interested in finding our more about getting involved, please ring our Helpline and ask for more information about our Involvement Programme. ?57 ? 58 USEFUL ORGANISATIONS smoking. Offers downtoearthhelpandadvicepeople whowanttostop The NHSSmokingHelpline Freephone: 08001692409 Mesothelioma forallUKmesotheliomapatientsandtheircarers. Provides impartialup-to-dateinformationrelatingtomalignant Mesothelioma UK Freephone: 0800716146 service tosupportcancerpatientsandtheircarersinhomes. Runs hospicecentresthroughouttheUK,andacommunitynursing Marie CurieCancerCare patient grants. doctors, cancercareandinformationunitsfinancialhelpthrough with cancerateverystageintheirillness.Provides MacmillanNurses, Supports anddevelopsservicestoprovidespecialistcareforpeople Macmillan CancerSupport entitlement. Provides informationandadviceaboutsocialsecurity benefit Benefit EnquiryLine be ofusetoyou. Here arethecontactdetailsofsomeorganisationswhichmay provide valuableinformationandsupportforlungcancerpatients. There aremanydifferentorganisationsworkingwiththeNHSto Useful organisations Freephone: 0800882200 Smokers Helpline: NHS SmokingHelpline Smokeline: Freephone: 08088080000 0800 84(Scotland) 0800 85(NorthernIreland) : 08000224332(England/Wales)

59

USEFUL WEBSITES ?

www.roycastle.org www.bbc.co.uk/health www.cancerhelp.org.uk www.direct.gov.uk www.drfoster.co.uk www.macmillan.org.uk www.mariecurie.org.uk www.mesothelioma.uk.com www.nhs.uk www.nhsinform.co.uk www.patient.co.uk www.hscni.net

information about lung cancer. information about Below are some suggested websites that contain a wide variety of suggested websites that contain Below are some especially careful where money is requested). especially careful freefone Helpline on 0800 358 7200 if you are unsure what to use (be on 0800 358 7200 if you are unsure freefone Helpline information on a website. Ask your doctor, cancer nurse or call our cancer website. Ask your doctor, information on a Remember that there is no way of monitoring the quality of that there is no way of Remember there may be a charge. there may many local libraries and internet cafes have this facility - although have this facility internet cafes libraries and many local home, why not ask family or friends to help. If this is not possible, help. If this is not or friends to not ask family home, why be obtained in many ways. If you don’t have access to the internet at have access to If you don’t in many ways. be obtained the most common methods is using the internet. Internet access can internet. Internet is using the common methods the most There are many ways of finding out more about lung cancer. One of One cancer. lung more about out of finding ways are many There Useful websites Useful ? 60 THE ROY CASTLE LUNG CANCER FOUNDATION www.roycastle.org Helpline on08003587200orgotoourwebsiteat For moreinformationpleasecallourfreephone prevention strategies. symptoms andformoreeffectiveUKwidelungcancer treatment andcare,improvedawarenessofsigns The charityalsocampaignsformoreresearch,better helping peopletoquitsmoking. practical andemotionalsupportaswell provides It fundsresearchintopreventionandearlydiagnosis, lung cancer. charity intheUKwhollydedicatedtodefeatof The RoyCastleLungCancerFoundation istheonly Head Office The Roy Castle Lung Cancer Foundation Enterprise Way, Liverpool, L13 1FB Tel: 0151 254 7200 Email: [email protected]

Lung Cancer Information and Support Services The Roy Castle Lung Cancer Foundation Rothesay House, 134 Douglas Street Glasgow G2 4HF Tel: 0141 331 4530 Email: [email protected]

Free Telephone Helpline If you would like more information on lung cancer please don’t hesitate to call The Roy Castle Lung Cancer Helpline on: 0800 358 7200 www.roycastle.org

Supported by an In partnership with educational grant from

www.nlcfn.co.uk