Sharing Information with Lung Cancer Patients:

Transcription

1 British Thoracic Society Sharing Information with Lung Cancer Patients: Guidance for Healthcare Professionals Discussing Options for Patients who have Lung Cancer FEBRUARY 2013 ISSN BRITISH THORACIC SOCIETY REPORTS VOL. 5 ISSUE

2 British Thoracic Society Sharing Information with Lung Cancer Patients Contents Rationale 1 Providing Information 1 Further Information/Resources 5 Appendix 1: Individual Conditions and Treatments 6 Non-Small Cell Lung Cancer 7 Surgery (NSCLC) 8 Radiotherapy with Curative Intent 10 Palliative Chemotherapy (NSCLC) 12 Second-Line Palliative Chemotherapy (NSCLC) 14 Palliative Radiotherapy to Chest 15 Palliative Padiotherapy to Sites Outside Chest 16 Targeted Therapy (NSCLC) 17 Treatment of Small Cell Lung Cancer 18 Mesothelioma 21 Active Symptom Control/Best Supportive Care 23 Appendix 2: A Six Step Guide Breaking Bad News 24 Appendix 3: References 26 This document was originally written for the Nottingham Lung Cancer Centre (Dr David R Baldwin, Consultant Physician, Nottingham University Hospitals) and later adapted for the British Thoracic Society by the Lung Cancer and Mesothelioma Specialist Advisory Group. The main contributors to this updated version are listed below: Dr Paul Beckett Dr Matthew Callister Dr Mark Slade Dr Richard Harrison Jeanette Draffan Dr Kevin Franks Dr Malcolm Lawson Mr Sion Barnard Dr James Dodd BTS Public Liason Committee We are grateful to the Healthcare Quality Improvement Partnership (HQIP) for permission to use the National Lung Cancer Audit (NLCA) data. Copyright 2013 British Thoracic Society. This document may be quoted provided full attribution is given. British Thoracic Society Reports, Vol 5, No 1, 2013 ISSN

3 British Thoracic Society Sharing Information with Lung Cancer Patients 1 RATIONALE Lung cancer is the most common cancer in the world. In the UK, around 41,500 new cases are diagnosed each year. Receiving a diagnosis of lung cancer will be for most patients an overwhelming experience, with a range of strong emotions including shock, anxiety, sadness, relief and uncertainty. In these circumstances, the importance of providing appropriate and understandable information to allay some of the anxiety and uncertainty cannot be underestimated. Many patients with lung cancer complain that they do not understand, or do not recall much of what has been said to them at the time they learn of their diagnosis[1]. It is likely that both the process by which the diagnosis is given, and the actual information provided, can be improved. This document is presented with the aim of advising those healthcare professionals who deal with lung cancer patients. It has been prepared by the Lung Cancer and Mesothelioma Specialist Advisory Group of the British Thoracic Society. The document guides healthcare professionals in the delivery of a suspected or confirmed lung cancer diagnosis and assists discussion of the therapeutic options available. This will most often be a respiratory physician or oncologist within the secondary care lung cancer multidisciplinary team, but can equally be used as a guide to sharing information by any healthcare professional in contact with lung cancer patients and their families. The document is not a substitute for a discussion with an appropriate specialist in respiratory medicine, surgery, palliative care or oncology and it is not intended that the document will be given to patients and their relatives. In particular, the opportunity to meet and maintain contact with a lung cancer specialist nurse (LCSN) is of paramount importance and should be offered to all patients. Inevitably, this is an area where robust evidence is difficult to come by, in contrast to the wealth of evidence available to guide treatment of the cancer itself. Therefore this document contains evidence-based guidance where it exists, but also contains much expert opinion from practitioners with extensive experience of care of lung cancer patients. Readers interested in more detailed understanding of the available qualitative evidence are signposted to the following references [2 8]. Our aim is to standardise the information that is delivered by explaining: Best practice in sharing information with patients and relatives, and in particular breaking bad news. Information about different lung cancer treatments in tabulated format. Statistics on prognosis and risks principally for the benefit of clinical staff. This information may be appropriate to discuss with patients, depending on their needs and concerns but should be done with due care and perspicacity. Resources available during and after the consultation. It is imperative that doctors appreciate that the nature of their consultation will often be the delivery of bad news and that they have appropriate training in communication skills[2].this document must be read in conjunction with other guidance that exists in relation to the breaking of bad news such as the 2011 NICE guidelines [9,10]. This document is an update of existing guidance, rewritten to take into account developments in lung cancer care, and to include more detailed statistics on prognosis based on data from the UK National Lung Cancer Audit (NLCA). PROVIDING INFORMATION Preparation For any clinician the lung cancer consultation is a challenging task and requires preparation: it is important to have acquired all the relevant information at the outset and have a clear plan for the structure of the discussion. Whilst this may be difficult in a busy out-patient clinic or ward round, time spent in preparation might actually shorten the consultation and is likely to leave doctor, patient and family more satisfied with the outcome. You may also be aware of additional issues such as those (commonly with cancer diagnoses) related to diagnostic delays and anticipate the likely time-line of the next stages in management. It can be difficult, for example, to balance the need to impress the urgency of the situation with the knowledge that the appointment with the oncologist or the date of a CT- PET scan cannot be for two weeks. The patient must have complete confidence in you and so uncertainty about clinical results, key facts, or in general not knowing their case threatens to undermine the relationship at a critical moment. It is not uncommon to have completed the discussion with the patient and feel that it has gone well to then be asked by a relative for the exact tumour staging. This is not the time to find out that the CT report has also identified liver metastases, so it is important therefore to have a final check of the histology report and the CT/PET reports and the stage before the patient comes into the consulting room. Often, patients will not take in much of the information discussed with them beyond understanding that a cancer diagnosis is likely/certain. Anxiety about the future may be overwhelming, so support from the LCSN during and after

4 2 British Thoracic Society Sharing Information with Lung Cancer Patients the consultation is of paramount importance. It is good practice (and an important peer review standard) to arrange the consultation around the availability of a member of the nursing team, so they can sit in on the consultation and provide immediate support once the consultation is over. Where practical, a second appointment a day or two after the first consultation, or alternatively an audio recording of the original consultation maybe appreciated by the patient and their relatives and is often provided by the LCSN[1]. Silence and Pace Two important and related considerations in the process are the appropriate use of silence and maintenance of an appropriate pace. This can be problematic particularly when there are other family members present. However the use of silence allows important information to be digested and allows you time to judge the reaction - silence can be the best way to facilitate responses from the patient. Although a lengthy silence may feel uncomfortable for the doctor, patients often comment favourably if they have been given time to take things in. You may have an interruption from relatives at this point, the most challenging of which can be a request in very direct terms about the prognosis. Pacing the discussion is critical, so that patients should feel that there is no pressure of time. The actual time taken for an effective consultation can be surprisingly short. Selecting the Level Choosing the level at which to pitch the technical information is important but difficult, particularly if there is a mixed audience, for example a patient who has no understanding of medical matters, a grandchild who is a nurse and a child who is internet-fluent. The level and pace may also have to be adjusted during the consultation. It is important to assess and manage the family s response, while making the patient your first concern. It is common for close family members to recognise immediately the gravity of the situation and you may find them increasingly distressed as the consultation proceeds. Inevitably complex areas such as mediastinal staging or reasons for inoperability have to be translated into lay terminology if basic principles are to be understood. Effective translation depends on the use of analogy and the ability to express things in lay language. While the use of analogy in an explanation may appear patronising and an over-simplification it is important not to confuse the need to make a biological process understandable to a lay person with talking down to the patient during the consultation. Thus too close to the heart/ too near the centre of the chest may carry a much clearer message than mediastinal invasion. To say that a cancer shows signs of progression is not as clear as saying that...at present the cancer is gaining the upper-hand, because progress, in lay terms, is a good thing. Similarly, the term mass is often not helpful since it can sound threatening or, like nodule, may be meaningless to the patient. A lump / a shadow / an area of scarring...which we need to sort out can be sufficient to trigger additional questions followed by...and if it turns out to be cancer (as it may well be) then we will know exactly how to tackle it. The use of simple diagrams, bronchoscopy report forms and scan images can be very helpful. The First Contact Patients may arrive at their first clinic appointment with widely differing ideas of the reason for their referral. The referring GP will often have been acting on a radiological report which will have varying (and at times inappropriate) degrees of certainty, and what patients will have been told ranges from a phone call with clinic appointment times to a certain diagnosis of lung cancer. Patients who have also had a CT may not know why it was necessary. The time between referral and consultation can be one of extreme stress, ranging from ideas of hopelessness to the more common expect the worst and hope for the best. Such fears, often shared by family members, will frequently have been left unspoken and provide a potent mix of emotions to negotiate at the first meeting. Occasionally however, patients may truly not have even considered cancer as a possibility - these can be the most challenging consultations particularly if the fact is not recognised by the clinical team until the first posttest visit. Patients may have been waiting in dread for some time before coming in to the room see you. Greeting the patient and their family and acknowledging this fact is part of an empathic approach.i can understand how stressful the wait for this appointment / the results must have been for you. It is good practice for the LCNS to be present at the first consultation, though it may be that their precise role has to be left unspoken until later. Often fear and deep anxiety in patients who suspect that they have lung cancer can be associated with a dread that nothing at all can be done for them. The relief of hearing that this is not the case at the start of the consultation may diffuse some of the anxiety. Introduce the concept of helping even perhaps of trying to sort things out very early on in the consultation before being explicit about the diagnosis. It is in this situation that pace and silence can be important. Having images already displayed on the monitor at the start of the consultation is not recommended. It distracts the patient, and patients often assume that the cardiac shadow is a very large cancer. It is preferable to switch the monitor on at the end of the consultation to show the images, although some patients

5 British Thoracic Society Sharing Information with Lung Cancer Patients 3 recoil at the idea of seeing the cancer and it is appropriate to ask if they wish to see their images. Often it will be quite apparent to the doctor at the first contact that cancer is overwhelmingly likely. It is recommended that this suspicion is clearly relayed to the patient who will usually appreciate the honesty. Although it is tempting immediately to provide positive information about treatment, silence is recommended to allow time for the news to sink in and for any immediate questions to be asked. Later, a positive but realistic plan of action can be delivered and a suggested approach is to explain that we have three main tasks: to work out what the diagnosis is, the extent of the problem, and the best treatment in your case, linking the planned investigations with each task. Test results The form in which the initial information is presented can colour the whole consultation. Thus, We have now completed the tests we know exactly what is wrong and, more importantly, what we can do to try and sort it out would be appropriate if the treatment is likely to be with curative intent, whereas...what we can do to try and help / what is the best way forward would be suitable alternative wording if treatment is unlikely to be curative. It is often useful to move straight to the question of whether the tests have shown cancer since for the patient this is the answer that is most pressing. Use of words such as I m afraid the tests did confirm that this is a cancer can be usefully followed by silence and later empathetic statements such as I can see this has come as a shock to you. Has this...come as a complete surprise or were you already suspecting this may be the problem? Next it can be helpful to establish an agenda for the meeting, such as...so if it is OK, what I would like to do now is to explain the exact diagnosis, check that you understand, start to plan the next steps and then answer any initial questions you have. Discussing the Stage To the lay person, stage has an important time component and it can be helpful to explain that cancers develop exponentially and will have been present for many months prior to the diagnosis (and in a clinically occult form in the case of early stage tumours). Lymph nodes may be a difficult lay concept, but most understand the idea of them swelling in the neck at times of infection. It may be helpful to describe lymph nodes in terms of a protective first line of defence. The analogy of a breach in the body s defences to reach mediastinal nodes... which, while hopefully preventing further spread, means that the cancer could not be removed without leaving some of it behind, may help (the concept of surgery not being a good idea if it is not complete, rings true with most patients).the explanation of why a CT-PET scan or lymph node sampling is needed then follows logically. Treatment The definitive diagnosis and management strategy to be discussed with the patient is decided by the lung multidisciplinary team following a review of the patient s radiological, histopathological and clinical parameters. Following this case review, different members of the multidisciplinary team can conduct the consultation with the patient but it is often a chest physician who conducts the first consultation after a treatment decision has been reached. To avoid confusion, however, it is preferable to keep the discussion to a minimum if the patient is to see the specialist providing treatment. In the initial consultation it is important to keep to simple clear messages, emphasising that more information will be given by the doctor / team coordinating the specific treatment. It is important to indicate that the treating specialist may alter the treatment plan as this may happen following further clinical assessment. Where certain therapies are not an option (e.g. surgery for unresectable lung cancer), it is usually sufficient to say that this is not an option and how this decision was reached. In some circumstances, there may be a need for the patient to see more than one specialist in order to make their decision. Where you have an element of doubt as to whether the Performance Status is adequate for treatment, it can be useful to discuss this. Thus, The treatment is strong and will have some risks and side-effects, so the specialist will want to be sure you are strong enough to withstand it. Where the decision making process requires more detailed information (such as statistics) the information must be accurate and it is best if the specialist coordinating treatment provides this. All members of the multidisciplinary team should agree on the local basic statistics as given in Appendix 1. It is important not to overestimate the patients understanding of concepts such as chemotherapy and radiotherapy. Surprisingly some patients are not familiar with these terms and will have only vague ideas. Chemotherapy means having strong medicines, usually given into a vein, that attack the cancer cells wherever they are; radiotherapy uses a focussed beam of X-rays to burn the cancer in a specific area. There will usually be a question at this stage (Is it worth it? How ill will it make me? Do I have to stay in hospital for this? How much will I have?) which will need to be dealt with.

6 4 British Thoracic Society Sharing Information with Lung Cancer Patients Prognosis There is good evidence the majority of patients prefer a realistic and individualised approach to information sharing including detailed information when discussing prognosis [11]. However, when patients are given a lung cancer diagnosis, they (or an accompanying relative) often ask How long? without thinking whether they truly are ready for this level of information particularly when this is the first time they have been informed of the diagnosis. It is therefore important to determine exactly what the patient wants to know and why [5]. In addition, it is important to endeavour to maintain hope by the provision of the diagnosis and a clear management strategy so that the patient feels supported during their period of care. A suggested form of words is It would be wrong to say that we can simply cure this cancer we probably cannot and it would be unfair to you to promise that we can. The aim of chemotherapy / radiotherapy is to stabilise the situation / put things on hold or / stop it growing, or even better, in some cases to actually shrink it. If it does this, you should have a period of reasonable health.if the cancer does not respond and continues to grow then we will have to plan another approach. We can also do this if it starts to grow again after a period of stability. When further anti-cancer treatment is not appropriate, it is unhelpful to say there is nothing more that we can do. It is more fitting to say that further surgery, radiotherapy or chemotherapy is not an option but supportive and palliative care are always available we can help you although we can t cure the condition. Although not strictly applicable to UK practice, recent evidence supports a positive approach to palliative care as an active treatment [12]. A more detailed discussion might include Things are not so good, the cancer has got the upper hand and we have a struggle on our hands. We have tried all the anti-cancer treatments which could have worked and it may now be the time to focus entirely on keeping you as well as we can for as long as we can. Changing focus in this way allows us to ensure that your quality of life is kept as good as possible for as long as possible, and in fact it has been shown that such care can also lead to an increase in life expectancy. to initial treatment has been assessed. Using seasons may have a positive impact and can feel less threatening than a more precise time frame. Thus, You (and your close family) will know yourself how you are doing by the spring / autumn / end of the summer (and will probably know before we do) from how you are feeling. Good signs would be an improvement in your cough / breathlessness / chest discomfort, a return of your energy levels and appetite - not so good signs may be a loss of energy (taking the effects of treatment into account), excessive sleeping during the day, a general loss of interest in life and a failure of your original symptoms to improve. We will be repeating your scans to give additional information on how you are responding. The terms progress and progression need care in their use as the non-medical meaning suggests improvement the reverse is true in oncology. Similarly, any sentence with a timeframe in it needs to be explicit in its meaning. Telling a patient that their treatment will be for six months- may later be recalled as He thinks I am going to only last six months. Clearly document what information has been delivered to the patient in relation to this aspect. Acknowledge the patients need to ask the question about their prognosis but make it clear that we do not have accurate answers to this question on an individual basis. Phrases that reflect this such as months, hopefully many months but not years may be used. If a more accurate prognosis is requested then data available in Appendix 1 may be used, but it is important to emphasise that these are average values and that some patient s will do worse and others better. It is reasonable during early consultations to explain that the outlook will become clearer once the response

7 British Thoracic Society Sharing Information with Lung Cancer Patients 5 FURTHER INFORMATION / RESOURCES Patients often welcome the chance of further information and support, as they cannot take in all the information that is discussed with them at once. Resources that might be useful include: The lung cancer nurse specialist is usually the first point of contact for most patients. Contact with the hospital Specialist Palliative Care nurse if the patient has a confirmed diagnosis and is being offered supportive/palliative treatment. Local patient support groups Macmillan Cancer Support: or freephone Roy Castle Lung Cancer Information: or freephone Mesothelioma UK: or freephone

8 6 British Thoracic Society Sharing Information with Lung Cancer Patients APPENDIX 1: Individual Conditions and Treatments The information given about survival figures (below) and about specific therapies may require careful checking by each lung cancer unit to ensure that the local experience reflects the information being given. There may be specific facilities that should be mentioned by name, or local survival figures may vary from those derived from the literature. Individual specialists may make a specific recommendation about words used or areas that they would always wish to cover themselves. It is important therefore that these sections are discussed at the local lung cancer Centre or Network and regularly updated. Survival data provided are based on data on 135,390 patients submitted to the National Lung Cancer Audit from trusts in England ( inclusive) and were analysed using Stata 11. The following assumptions were made in conducting the analyses: Survival was determined from date first seen in secondary care, or diagnosis date if unavailable. Receipt of treatment was defined by entry of a treatment start date.

9 British Thoracic Society Sharing Information with Lung Cancer Patients 7 Non-Small Cell Lung Cancer Non- Small Cell Cell Lung Cancer Median Median Survival Survival (months)in all NSCLC all NSCLC all based NSCLC based on NLCA based on on LUCADA Stage Stage Ia Stage Ia Ia Stage Stage IbStage Ib Stage Stage Stage IIa IIa IIa Stage Stage Stage IIb IIb IIb Stage Stage Stage IIIa IIIa IIIa Stage Stage Stage IIIb IIIb IIIb Stage Stage Stage IV IV IV All patients All patients All patients PS 0-1 PS 0-1 Not Not reached reached PS 0-1 Not reached PS 2 PS PS PS 3-4 PS PS PS PS Unknown PS Unknown year 5 year survival survival (%) (%) in all in NSCLC all NSCLC based based on on LUCADA 5 year survival (%) in all NSCLC Stage Stage Ia based Ia on Stage NLCA Stage Ib Ib Stage Stage IIa IIa Stage Stage IIb IIb Stage Stage IIIa IIIa Stage Stage IIIb IIIb Stage Stage IV IV All patients All patients Stage Ia48% 48% Stage 39% Ib 39% Stage 37% IIa37% Stage 25% 25% IIb Stage 12% 12% IIIa 7% Stage 7% IIIb 3% Stage 3% IV All PS patients 0-1 PS % 56% 56% 39% 49% 49% 37% 46% 46% 32% 25% 32% 17% 12% 17% 10% 10% 7% 5% 5% 3% PS PS PS 2 56% 31% 31% 49% 15% 15% 46% 12% 12% 12% 32% 12% 4% 17% 4% 3% 10% 3% 1% 1% 5% PS 3-4 PS 3-4 PS 2 19% 19% 31% 9% 9% 15% 6% 6% 12% 3% 3% 12% 3% 3% 4% 1% 1% 3% 1% 1% 1% PS PS Unknown 51% 51% 40% 40% 43% 43% 28% 28% 12% 12% 7% 7% 3% 3% PS % 9% 6% 3% 3% 1% 1% PS Unknown 51% 40% 43% 28% 12% 7% 3% Survival Survival By Stage By Stage Days Days IA IA IB IB IIA IIA IIB IIB IIIA IIIA IIIB IIIB IV IV Survival Survival By By Performance Status Status Days Days PS 0 PS 0 PS 1 PS 1 PS 2 PS 2 PS 3 PS 3 PS 4 PS

10 8 British Thoracic Society Sharing Information with Lung Cancer Patients Surgery (NSCLC) surgeon is the best person to fully assess the type of surgery and the likely toxicities and benefits that an individual patient will experience. Basic patient information Surgery is usually offered for patients with earlier stages of disease (Stage I and II) where it gives the best chance (but not guarantee) of cure. Refer the patient to the Lung Cancer Nurse Specialist/Cardiothoracic Nurse Specialists who will provide them with additional support and patient information leaflets to back up information given at the consultation Additional patient information Patients are normally in hospital for approximately days Adjuvant chemotherapy may be discussed with the patient they would need to be fit enough to start treatment within 6 8 weeks of surgery. Neo-adjuvant chemotherapy might be offered this is usually in the context of a clinical trial patient s case has been/will be reviewed by a panel of experts to ensure the most beneficial treatment is offered to them Side effects After the operation, a small number of patients experience pain which persists beyond three months (5 10%). Healthcare professional information Five year survival statistics are available (see prognosis) and could be discussed with the patient, although it is recommended that discussion be limited to avoid mixed messages Some patients, despite careful work-up, are very breathless following lung resection probably best to only mention this if very borderline for surgery. A milder increase in dyspnoea is more common. 5 year survival in surgically-treated patients based on NLCA All Stage Ia Stage Ib Stage IIa Stage IIb Stage IIIa 50% 67% 58% 56% 44% 35% Median Survival with/without surgery (months) based on NLCA Stage Ia Stage Ib Stage IIa Stage IIb Stage IIIa Surgery Not reached Not reached Not reached No surgery

11 British Thoracic Society Sharing Information with Lung Cancer Patients 9 Survival By Surgical Treatment and Stage (NSCLC) Days Stage I, no surgery Stage I, surgery Stage II, no surgery Stage II, surgery Stage III, no surgery Stage III, surgery Adjuvant chemotherapy: Provides an absolute benefit of additional 4% at 5years and disease- free survival of Additional 5% at 5 Statistics years [13,14]. Adjuvant chemotherapy: Provides an absolute benefit of additional 4% at 5years and disease-free survival of 5% at 5 years [13,14].

12 10 British Thoracic Society Sharing Information with Lung Cancer Patients Radiotherapy with Curative Intent Clinical Oncologist is the best person to fully assess the type of radiotherapy and the likely toxicities and benefits that an individual patient will experience. patient s case has been/will be reviewed by a panel of experts to ensure the most beneficial treatment is offered to them Basic patient information Radiotherapy (sometimes called radical radiotherapy) uses high-energy rays to kill cancer cells with the aim of curing the patient of the disease. The treatment is effective and many patients with early stage disease will be cured following treatment, although in some patients the cancer will unfortunately recur at some stage in the future. The cancer team think this is the best option for the patient and there will be an opportunity to discuss the therapy in detail with the specialist who will co-ordinate it The patient has to attend the radiotherapy department for this treatment - the number of times the patient will attend during the treatment depends on what particular type of radiotherapy is being given (see below). Refer the patient to the Lung Cancer Nurse Specialist/Specialist Palliative Care Nurse who will provide them with additional support and patient information leaflets to back up information given at the consultation. Additional patient information There are various types of radiotherapy aiming to cure cancer which your oncologist will discuss with you. The commonest form of radiotherapy aiming at cure currently used in the UK involves 20 to 30 trips to the radiotherapy department which will usually be 5 trips per week (Mon-Fri) over 4 to 6 weeks. This is commonly referred to as radical radiotherapy. This may be combined with chemotherapy during or before the radiotherapy (this is discussed in a separate section). Stereotactic radiotherapy (also called Stereotactic Ablative Body Radiotherapy SABR, or Stereotactic Body Radiotherapy SBRT) is a new type of curative radiotherapy where very high doses of radiotherapy can be given on fewer visits (between 3 and 8) to the radiotherapy department. Continuous hyperfractionated radiotherapy (referred to as CHART) is a type of radiotherapy where patients receive radiotherapy three times a day over a 12 day period (including weekends). Side effects Inflammation of the gullet that usually resolves within a few weeks of treatment A dry cough A skin rash, typically red skin but can occasionally cause the skin to break down and need dressings. Feeling generally tired or lethargic

13 British Thoracic Society Sharing Information with Lung Cancer Patients 11 Occasionally radiotherapy may cause lung inflammation which can result in patients noticing worsening breathlessness. This may come on over a period of weeks or months after treatment. Healthcare professional information The specific type of radiotherapy that will be appropriate for the patient will reflect local expertise and availability of radiotherapy equipment as well as characteristics of the tumour. Patients undergoing curative radiotherapy may need full pulmonary function tests before commencing treatment. The lung function requirements to tolerate curative radiotherapy will vary between the treatments listed above and are should be judged by a clinical oncologist. Additional Statistics In a Cochrane review of conventional radical radiotherapy for early stage lung cancer [15], overall survival varied between 33-72% at two years, 17-55% at three years and 0-42% at five years. Complete response rates were 33-61% and local failure rates between 6-70%. Better response rates and survival were seen in patients with small tumours or receiving higher doses of radiotherapy. Worse outcome was seen in patients with poor performance status and weight loss. Long term outcome data from SABR/SBRT is still scarce due to the recent development of this technique. Two early studies of SABR/SBRT for early stage lung cancer showed three year survival rates of 56% [16] and 71% [17]. Local control at three years was 91% and 80% respectively. Overall survival at three years was better for stage IA patients (79%) then stage IB patients (56%) [17].

14 12 British Thoracic Society Sharing Information with Lung Cancer Patients Palliative Chemotherapy (NSCLC) Basic patient information Chemotherapy might be helpful in relation to the patient s quality of life and helps symptoms in at least half of patients. Chemotherapy may also increase survival Chemotherapy will not provide a cure for the patient. The fitter the patient the better they will respond to and tolerate chemotherapy Oncologist is the best person to fully assess the type of chemotherapy and the likely toxicities and benefits that an individual patient will experience. patient s case has been/will be reviewed by a panel of experts to ensure the most beneficial treatment is offered to them Refer the patient to the Lung Cancer Nurse Specialist/Specialist Palliative Care Nurse who will provide them with additional support and patient information leaflets to back up information given at the consultation. Additional patient information Survival benefits are small but some patients do very well. Chemotherapy in NSCLC is therefore a treatment that should be tried with the knowledge that it may not help or even cause harm. Some patients do not wish to take this option, others do and the Oncologist is happy to accept either decision. There is always the option to stop after the first cycle suck it and see approach. The average holding time after chemotherapy is 3-4 months before the cancer starts to grow again. There might be a chemotherapy trial available but the Oncologist will discuss this in detail with the patient if they would like to participate Side effects Chemotherapy has a range of side effects but these depend on exactly which drugs are given: Fatigue / malaise is common Hair loss (not with all drugs) Nausea and vomiting. Dependent on the regimen, there is a significant risk of developing life-threatening neutropenia Healthcare professional information The patient should have a PS of 0, 1 or 2. There may be ways to optimise the PS prior to treatment (e.g. draining a pleural effusion, pain relief, corticosteroids etc). The chemotherapy regime is tailored to the subtype of NSCLC, so a precise histological diagnosis will provide the most benefit. Age is not an over-riding issue in choosing whether to have chemotherapy since several studies have shown that responses and tolerability of chemotherapy in older patients are comparable to patients of a younger age.

15 British Thoracic Society Sharing Information with Lung Cancer Patients 13 Additional Statistics: Survival Results from a Cochrane meta-analysis showed a significant benefit of chemotherapy over best supportive care (HR = 0.77; 95% CI 0.71 to 0.83, P < ), equivalent to a relative increase in survival at 1 year of 23%, an absolute improvement in absolute survival of increase 9% at 12 months, in median increasing survival survival of 1.5 from months 20% (from to 29% 4.5 or an months absolute to increase six months)[18]. in median survival of 1.5 months (from 4.5 months to six months)[18]. 1- year survival (%) with/without chemotherapy in Stage IIIB/IV NSCLC based on LUCADA 1-year survival (%) with/without chemotherapy All in Stage IIIB/IV PS NSCLC 0-1 based on NLCA PS 2 PS 3-4 Chemotherapy All 43% PS % PS 29% 2 21% PS 3-4 Chemotherapy No chemotherapy 43% 14% 47% 25% 29% 12% 5% 21% No chemotherapy 14% 25% 12% 5% Median Survival (months) with/without chemotherapy in Stage IIIB/IV NSCLC based on LUCADA Median Survival (months) with/without chemotherapy in Stage IIIB/IV NSCLC based on NLCA All PS 0-1 PS 2 PS 3-4 Chemotherapy All 10.3 PS PS PS Chemotherapy No chemotherapy No chemotherapy Survival By Chemotherapy Treatment and Performance Status IIIB/IV NSCLC Days No chemo, PS 0-1 No chemo, PS 2 No chemo, PS 3-4 Chemotherapy, PS 0-1 Chemotherapy, PS 2 Chemotherapy, PS 3-4

16 14 British Thoracic Society Sharing Information with Lung Cancer Patients Second-Line Palliative Chemotherapy (NSCLC) Basic patient information Second line Chemotherapy should be considered for those patients with locally advanced or metastatic NSCLC in whom relapse has occurred after previous chemotherapy or when first line chemotherapy has failed to provide the required response. It may be helpful in relation to the patient s quality of life and symptoms. Second Line Chemotherapy will not provide a cure for the patient. The fitter the patient the better they will tolerate second line chemotherapy. oncologist is the best person to fully assess the type of chemotherapy and the likely toxicities and benefits that an individual patient will experience. Refer the patient to the Lung Cancer Nurse Specialist/Specialist Palliative Care Nurse who will provide them with additional support and patient information leaflets to back up information given at the consultation. Additional patient information Survival benefits are small but some patients may benefit. Second line Chemotherapy in NSCLC is therefore a treatment that should be tried with the knowledge that it may not help or even cause harm. Some patients do not wish to take this option, others do and the Oncologist is happy to accept either decision. There is always the option to stop after the first cycle. There might be a chemotherapy trial available but the Oncologist will discuss this in detail with the patient if they would like to participate. patient s case has been/will be reviewed by a panel of experts to ensure the most beneficial treatment is offered to them Side effects All Chemotherapy have a range of side effects but these depend on exactly which drugs are given: Fatigue / malaise is common Hair loss (not with all drugs) Nausea and vomiting. Dependent on the regimen, there is a significant risk of developing life-threatening neutropenia Skin rash Diarrhoea/constipation Healthcare professional information The patient should have a PS of 0, 1 or 2. There may be ways to optimise the PS prior to treatment (e.g. draining a pleural effusion, pain relief, corticosteroids etc). The chemotherapy regime is tailored to the subtype of NSCLC, so a precise histological diagnosis will provide the most benefit. The chemotherapy regime is tailored to the subtype of NSCLC and EGFR status, so a precise histological diagnosis will provide the most benefit.

17 British Thoracic Society Sharing Information with Lung Cancer Patients 15 Palliative Radiotherapy to Chest Basic patient information A very useful treatment to help improve symptoms (e.g. pain, cough, haemoptysis) arising from local tumour effects. It can also be given in higher dose to patients of good performance status even in the absence of symptoms, because high-dose palliative RT confers a survival benefit. There is no benefit to being given low-dose palliative RT(10-17 Gy in 1-2 fractions) before the onset of symptoms: o The patient won t live any longer o They might feel worse in the short term due to side effects of treatment o It is better to keep this type of radiotherapy in reserve Clinical Oncologist is the best person to fully assess the type of radiotherapy and the likely toxicities and benefits that an individual patient will experience. patient s case has been/will be reviewed by a panel of experts to ensure the most beneficial treatment is offered to them If the patient has not already met a lung cancer specialist nurse, refer them at this stage. The LCSN will provide them with additional support and patient information leaflets to back up information given at the consultation. Additional patient information A small number of patients can feel worse initially (<1:10 cases). These problems are usually temporary and related to side effects of the treatment. These symptoms almost always settle. Palliative Radiotherapy can be given in a number of different ways and the Clinical Oncologist will discuss the most appropriate form of radiotherapy with the patient. It is given in the Radiotherapy Department. Patients usually visit the Radiotherapy Department as an outpatient, during the week (not at week-ends) The Clinical Oncologist will discuss this in detail with the patient Side effects Depend on which type of radiotherapy treatment schedule the patient has, but they may include: Fatigue Difficulty and pain on swallowing more common with high-dose regimens Reddening of the skin like sunburn Flu-like symptoms increased breathlessness / cough Healthcare professional information Benefits two thirds of patients who are symptomatic of their cancer Palliative Radiotherapy can be given in the following schedules: o A single visit o One visit daily for up to 13 visits on a Monday Friday basis (high dose palliative where patient judged to have adequate fitness) o Internal radiotherapy (brachytherapy) Additional Statistics Median survival is 4.6 months - this may be influenced by dose [19]. 21.7% of patients are alive 1 year after low-dose, and 26.5% after high-dose palliative radiotherapy, but there is only a modest improvement in symptom control with higher-dose regimens [20]. External beam radiotherapy alone is more effective than brachytherapy for symptom palliation in previously untreated patients[21].

18 16 British Thoracic Society Sharing Information with Lung Cancer Patients Palliative Radiotherapy to Sites Outside Chest Basic patient information It is a useful treatment to help improve symptoms such as pain and those resulting from the tumour or spread of the tumour pressing on nerves or other structures. Radiotherapy is given to treat symptoms or to prevent or delay the onset of symptoms There is a minimal or no effect on survival There are significant side effects that should be discussed with the patient. The Clinical Oncologist should do this in detail, although occasionally the patient may wish to receive basic information from the nurse/physician (see below). Clinical Oncologist is the best person to fully assess the type of radiotherapy and the likely toxicities and benefits that an individual patient will experience. Refer the patient to the Lung Cancer Nurse Specialist/Specialist Palliative Care Nurse who will provide them with additional support and patient information leaflets to back up information given at the consultation. Additional patient information The details of the radiotherapy schedule will depend on the site treated and will be explained by the clinical oncologist. It is given in the Radiotherapy Department. Patients usually visit the Radiotherapy Department as an outpatient, during the week (not at week-ends). The Clinical Oncologist will discuss this in detail with the patient patient s case has been/will be reviewed by a panel of experts to ensure the most beneficial treatment is offered to them Side effects Generic side effects depend on which type of radiotherapy treatment schedule the patient has, but they may include fatigue difficulty swallowing flu-like symptoms trophic skin changes Healthcare professional information Brain metastases: Some patients can feel worse initially (<1:10 cases). There is likely to be hair loss in most people, which is often thinning but can be complete. Surgery may be considered for oligometastatic disease or for rapid reduction in intracranial pressure. Benefits two thirds of patients with bone pain; can reduce the risk of spinal cord compression. Around 25% of patients with cord compression have an improvement in neurology. Benefit is likely to be less, the worse the initial deficit. Can be used to treat superior vena caval obstruction, although stenting may be preferable - obstruction is relieved in 60% after palliative radiotherapy but in 95% by stenting [22]. Additional Statistics Median survival improves from 1 month to 3-6 months after whole brain radiotherapy for metastases with 10-20% 1 year survival [23].

19 British Thoracic Society Sharing Information with Lung Cancer Patients 17 Targeted Therapy (NSCLC) Basic patient information This is a type of chemotherapy given as tablets. It specifically attacks an abnormal protein in the cancer cells. It is given continuously and the response of the cancer is monitored. The treatment is stopped if there is no evidence that it is helping. Treatment should be discussed in detail with an Oncologist. Refer the patient to the Lung Cancer Nurse Specialist who will provide them with additional support and patient information leaflets to back up information given at the consultation oncologist is the best person to fully assess the type of targeted therapy and the likely toxicities and benefits that an individual patient will experience. Additional patient information 7 in 10 patients who have the abnormal protein benefit from treatment It can be given as the first treatment or after other treatments including conventional chemotherapy If the cancer does not respond to this treatment or stops responding, conventional chemotherapy may be available. Details of overall treatment strategy should be planned and discussed in detail with an Oncologist patient s case has been/will be reviewed by a panel of experts to ensure the most beneficial treatment is offered to them Side effects Acne is common Diarrhoea Fatigue Infrequently interstitial lung disease can develop Healthcare professional information EGFR testing should be performed in line with local MDT policy Patients will develop resistance to EGFR inhibitors after a variable period of time Other targeted therapies are being developed and will be available in the near future, such as Crizotinib for EML4-ALK fusion protein driven cancers. Additional Statistics In advanced NSCLC previously treated with chemotherapy, erlotinib-treated patients had a 2 month overall survival benefit compared to placebo treatment [24]. As first line treatment no survival benefit has been demonstrated but Gefitinib offered a 50% risk reduction for progression or death [25]. The benefits may have been underestimated by lack of effective molecular selection in these trials.

20 18 British Thoracic Society Sharing Information with Lung Cancer Patients Treatment of Small Cell Lung Cancer Basic patient information Chemotherapy is the treatment of choice for this type of lung cancer, and it is often combined with radiotherapy. Two thirds of patients will achieve improvement in their symptoms with chemotherapy It is likely to be beneficial to their quality of life The majority of patients will experience an improvement in survival. A few patients will achieve long term survival (>5 years) Oncologist is the best person to fully assess the type of chemotherapy and the likely toxicities and benefits that an individual patient will experience. Refer the patient to the Lung Cancer Nurse Specialist who will provide them with additional support and patient information leaflets to back up information given at the consultation Additional patient information The potential benefits of chemotherapy depend on the stage of disease but the Oncologist will be able to inform the patient more fully The fitter the patient (i.e. the better their performance status) the better their survival with chemotherapy. Most patients tolerate chemotherapy well, or have fairly minor side effects Side effects Chemotherapy has a range of side effects but these depend on exactly which drugs are given: patient s case has been/will be reviewed by a panel of experts to ensure the most beneficial treatment is offered to them Fatigue / malaise is common Hair loss (not with all drugs) Nausea and vomiting Dependent on the regimen, there is a significant risk of developing life-threatening neutropenia Healthcare professional information Small Cell Lung Cancer has previously been categorised into two stages (extensive stage and limited stage) but now the TNM system is preferred. The term limited was used to indicate an area of the chest that can be encompassed by a single irradiation port; supraclavicular nodes may be included. Such patients may be offered sequential or concurrent chemo/radiotherapy. In Stage I-IIIA, complete responses to chemoradiation are seen in up to 50% of patients, with partial responses in a further 30-40%. In stage IIIB/IV disease, overall response rates are 60-80%, with complete responses in around 15%. The disease often does recur despite good initial responses this is one occasion where smoking cessation is positively beneficial. Prophylactic cranial radiotherapy (PCI) may also be offered to some patients dependent on local control following chemotherapy.

21 British Thoracic Society Sharing Information with Lung Cancer Patients 19 Median Survival (months) for all SCLC based on NLCA Median Survival (months) for for all all SCLC SCLC based based on on LUCADA All patients Limited Stage Extensive Stage All patients All All patients 6.5 Limited Stage Stage 12.6 Extensive Stage Stage 4.5 All All patients PS PS PS PS PS PS PS 3-4 PS PS PS Unknown PS PS Unknown year survival (%) for all SCLC based on NLCA 5 year 5 year survival (%) (%) for for all all SCLC SCLC based based on on LUCADA All patients All All patients Limited Stage Limited Stage Stage Extensive Stage Extensive Stage Stage All patients All All patients 6.0% 6.0% 6.0% 12.6% 12.6% 12.6% 2.4% 2.4% 2.4% PS PS 0-1 PS % 8.9% 8.9% 15.8% 15.8% 15.8% 4.5% 4.5% 4.5% PS PS 2 PS % 2.7% 2.7% 7.3% 7.3% 7.3% 0.8% 0.8% 0.8% PS PS 3-4 PS % 1.2% 1.2% 4.6% 4.6% 4.6% 0.8% 0.8% 0.8% PS PS Unknown PS Unknown 4.9% 4.9% 4.9% 11.9% 11.9% 11.9% 2.6% 2.6% 2.6% Survival Survival By Stage By Stage (SCLC) (SCLC) Days Days Limited Limited Extensive Extensive Survival Survival By By Performance Status Status (SCLC) (SCLC) Days Days PS 0 PS 0 PS 1 PS 1 PS 2 PS 2 PS 3 PS 3 PS 4 PS 4 5-year 5- year 5- year survival (%) (%) (%) with/without chemotherapy in SCLC in based SCLC in SCLC on based NLCA based on on LUCADA Limited Limited Stage Stage Stage Extensive Extensive Stage Stage Stage All All PS 0-1 PS 0-1 PS 2 PS 2 PS 3-4 PS 3-4 All All PS 0-1 PS 0-1 PS 2 PS 2 PS 3-4 PS 3-4 All PS 0-1 PS 2 PS 3-4 All PS 0-1 PS 2 PS3-4 Chemotherapy 14.4% 14.4% 17.3% 17.3% 6.8% 6.8% 0% 0% 3.8% 3.8% 5.4% 5.4% 2.0% 2.0% 1.9% 1.9% Chemotherapy 14.4% 17.3% 6.8% 0% 3.8% 5.4% 2.0% 1.9% No No chemotherapy 7.7% 7.7% 10.7% 10.7% 8.1% 8.1% 3.7% 3.7% 0% 0% 0.7% 0.7% 0% 0% 0.4% 0.4% No chemotherapy 7.7% 10.7% 8.1% 3.7% 0% 0.7% 0% 0.4%