Living with itLung cancer (all types)

Back to the Lung cancer hub →86 questions · 6 red cards · 1 decision aid

The decisions you may face, the aids that walk through them, the warnings on record, the first sixty days and the questions to ask.

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The first 60 days →Appointment prep sheet →Side effects →Help with costs →

Decisions you may face

33 with more than one option · full decision page →

One section per setting: the options named, what each is for, the trials behind them, the recorded trade-offs and the questions to ask.

Decision aids

All decision aids →

Answer a few questions from a report and read the guideline statement that applies, quoted word for word with its source. Educational aids to prepare for an appointment, not advice.

Surgery or radiotherapy aid

Red cards

From the labels and guidelines behind the standard of care. Your team's thresholds win.

Emergency services now
Fainting or palpitations
Fainting, near-fainting, or an irregular or racing heartbeat; several kinase inhibitors prolong the QT interval and the labels require ECG and electrolyte monitoring.
Adagrasib Afatinib Alectinib Brigatinib Capmatinib Crizotinib Dabrafenib + trametinib Divarasib Entrectinib Lazertinib Lorlatinib Mobocertinib Nintedanib Olomorasib Osimertinib Pralsetinib Repotrectinib Savolitinib Selpercatinib Sotorasib Taletrectinib Tepotinib Zongertinib source
Emergency services now
Bleeding or bruising
Bleeding that does not stop by itself, bleeding from more than one site, or new bruising in several places or one large area.
Carboplatin Cisplatin Docetaxel Lurbinectedin Pemetrexed Platinum + etoposide (EP / CE)Topotecan Vinorelbine source
Emergency services now
Hypophysitis or adrenal crisis
Persistent headache with extreme tiredness, nausea, dizziness on standing or low blood pressure. Vomiting, severe weakness or collapse is adrenal crisis.
Atezolizumab Cemiplimab Durvalumab Ipilimumab Ivonescimab Nivolumab Pembrolizumab Serplulimab source
Emergency services now
Skin reaction
Blisters, peeling, or sores in the mouth or eyes with a rash. Enfortumab vedotin carries a boxed warning for Stevens-Johnson syndrome and toxic epidermal necrolysis, mostly in the first cycle.
Datopotamab deruxtecan Patritumab deruxtecan Telisotuzumab vedotin Trastuzumab deruxtecan source
Emergency services now
Bowel perforation
Sudden severe abdominal pain, a hard or very tender abdomen, or abdominal pain with vomiting and fever. Boxed warning for gastrointestinal perforation on bevacizumab.
Ivonescimab Nintedanib Ramucirumab source
Emergency services now
Struggling to breathe, choking or gasping and unable to speak
The NHS says to call 999 or go to A&E if you are struggling to breathe, if you are choking, gasping and unable to speak, or if you have pain in your chest or upper back. Do not drive yourself.
Anaemia Cancer-related fatigue (tiredness)Malignant pleural effusion and ascites source

See all on the product pages:Adagrasib Afatinib Alectinib Anaemia Atezolizumab Brigatinib Cancer-related fatigue (tiredness)Capmatinib Carboplatin Cemiplimab Cisplatin Crizotinib Dabrafenib + trametinib Datopotamab deruxtecan Divarasib Docetaxel Durvalumab Entrectinib Ipilimumab Ivonescimab Lazertinib Lorlatinib Lurbinectedin Malignant pleural effusion and ascites Mobocertinib Nintedanib Nivolumab Olomorasib Osimertinib Patritumab deruxtecan Pembrolizumab Pemetrexed Platinum + etoposide (EP / CE)Pralsetinib Ramucirumab Repotrectinib Savolitinib Selpercatinib Serplulimab Sotorasib Taletrectinib Telisotuzumab vedotin Tepotinib Topotecan Trastuzumab deruxtecan Vinorelbine Zongertinib·Printable cards in the navigator

Questions to ask

Bring to your appointment

Questions to ask your oncologist about Lung cancer

Curated set · 86 questions

Newly diagnosed

Who is my lung cancer clinical nurse specialist, and what number do I ring between appointments?
Why: NICE NG122 (1.1.1) says a lung cancer clinical nurse specialist should be available at all stages of care to support people and, as appropriate, their family members or carers, and (1.19.3) that people should know how to contact them between scheduled hospital visits. Every urgent card on this page starts with that number.
Which type of lung cancer is it, non-small-cell or small-cell, and what stage?
Why: The NHS says the treatment you have depends on the size of the cancer and where it is, the type of lung cancer you have, whether it has spread and whether it has certain genetic changes; the two types run on different timetables, so the answer changes what happens next week.
Is the aim of treatment to cure the cancer, or to control it and keep me well?
Why: The NHS says that if advanced lung cancer cannot be cured, the aim of treatment will be to slow down the growth and spread of the cancer, to help with symptoms and to help you live longer. Hearing the aim out loud early saves a great deal of confusion later.
Have the tests on the tumour been sent, and when will the results be back?
Why: NICE NG122 (1.2.11) says samples should be adequate to permit pathological diagnosis including tumour subtyping and assessment of molecular markers, and (1.2.12) points to the National Genomics Test Directory for the sequencing panels that guide treatment; the results decide which treatments are open to you.
Have I had a PET-CT scan, and do I need a scan of my brain?
Why: NICE NG122 (1.2.4) says all people with lung cancer who could potentially have treatment with curative intent should be offered PET-CT before treatment; brain imaging is a separate question NICE has an open research recommendation on, so it is fair to ask what your team does and why.
I smoke, or I used to. Does that change my treatment, and what help is there if I want to stop now?
Why: NICE NG122 (1.3.1 to 1.3.3) says to inform people that smoking increases the risk of pulmonary complications after lung cancer surgery, to advise people to stop smoking as soon as the diagnosis is suspected and tell them why this is important, and not to postpone surgery for lung cancer to allow people to stop smoking. Stopping is offered as a treatment with a benefit, not a judgement, and your treatment does not depend on it.
I have never smoked. Does that change anything about my tests or treatment?
Why: Lung cancer also happens to people who never smoked, and the record notes that some of the targetable changes, ROS1 among them, are enriched in people who never smoked (Bergethon 2012). NICE NG122 (1.2.12) points teams at the National Genomics Test Directory panels whatever your history, so the question to ask is which panel was sent rather than which box you fit.
When does my case go to the lung multidisciplinary team meeting, and how will I hear what was agreed?
Why: NICE NG122 (1.6.1) says everyone potentially suitable for multimodality treatment should be assessed by a thoracic oncologist and by a thoracic surgeon, which means the plan is made by a group, and you are entitled to know what they concluded and why.
What can I do in the next few weeks to be in better shape for treatment?
Why: Roy Castle Lung Cancer Foundation's living with lung cancer material covers managing symptoms, keeping active and looking after your physical and mental wellbeing; Cancer Research UK says staying as active as possible matters when you are breathless, and NICE asks for breathing and coping support to be available in all care settings.

Early lung cancer: surgery, radiotherapy or both, and what your lung function means for the choice

Am I being offered an operation, radiotherapy, or a choice between them, and why?
Why: NICE NG122 (1.5.1) says that for people who are well enough and for whom treatment with curative intent is suitable, offer lobectomy; (1.5.5) for stage 1 to 2a disease in people who decline lobectomy or in whom it is contraindicated, offer stereotactic ablative radiotherapy or sublobar resection; and (1.5.8) if they decline any surgery or it is contraindicated, offer stereotactic ablative radiotherapy.
What did my breathing tests show, and what would my breathing be like after the operation?
Why: NICE NG122 (1.4.9) says to perform spirometry and transfer factor testing before treatment with curative intent, and (1.4.11) to perform a functional segment count before surgery to predict postoperative lung function; those two numbers are the heart of this decision, so ask for them in plain terms.
If my predicted lung function after surgery is low, is an operation still possible?
Why: NICE NG122 (1.4.12) says to offer people with predicted postoperative FEV1 or transfer factor below 30 percent the option of treatment with curative intent if they accept the risks of breathlessness and associated complications; the guideline treats it as your judgement to make with the numbers in front of you, not an automatic refusal.
How much of my lung would come out, and would it be keyhole or open?
Why: NICE NG122 (1.5.1) names lobectomy, either open or thoracoscopic, and (1.5.2) says to offer more extensive surgery such as bilobectomy or pneumonectomy only when needed to obtain clear margins, so the size of the operation should have a reason you can hear.
What is my personal risk from this operation?
Why: NICE NG122 (1.4.1) says that when evaluating surgery, consider a global risk score such as Thoracoscore to estimate the risk of death, and ensure the person is aware of the risk before they give consent for surgery. You are entitled to that number before you sign.
If I have stereotactic radiotherapy instead, how many visits is it and what are the risks?
Why: NICE NG122 notes that stereotactic ablative radiotherapy is non-invasive, is usually delivered as outpatient treatment and that people often prefer it because it involves fewer hospital visits; Cancer Research UK explains that radiotherapy to the chest can inflame the lungs, causing a dry cough or shortness of breath soon after treatment.
Would stopping smoking now change my operation, and can I be referred today?
Why: NICE NG122 (1.3.1 and 1.3.3) says smoking increases the risk of pulmonary complications after lung cancer surgery and that surgery should not be postponed to allow people to stop; Roy Castle says it is equally important to quit after a diagnosis because research suggests this can help you respond better to treatment. Help is practical (patches, medicines, a local service), and the offer stands whether or not you take it.

Treatment before or after surgery, and which results have to come back first

Is there a treatment before the operation, and would it delay surgery?
Why: NICE NG122 (1.6.8) says nivolumab with chemotherapy is recommended for neoadjuvant treatment of resectable non-small-cell lung cancer of at least 4 cm or node positive, and (1.6.9 and 1.6.10) that durvalumab or pembrolizumab with platinum chemotherapy are recommended before and then after surgery in defined groups; the trade-off between a few weeks of treatment first and going straight to theatre is a fair thing to ask about.
Do my EGFR and ALK results need to be back before we decide about treatment before surgery?
Why: NICE NG122 (1.6.9) restricts the durvalumab recommendation to resectable disease without EGFR mutations or ALK rearrangements, and (1.6.14 and 1.6.15) recommends osimertinib after complete resection for EGFR exon 19 deletion or L858R disease and alectinib after complete resection of ALK-positive disease; the result decides between whole treatment routes.
Will I need chemotherapy after the operation, and what does the pathology report have to say for that?
Why: NICE NG122 (1.6.11) says to offer postoperative systemic anticancer therapy to people with good performance status and T1a to 4, N1 to 2, M0 disease, (1.6.12) to consider it for T2b to 4, N0, M0 tumours greater than 4 cm, and (1.6.13) to offer a platinum-based combination regimen.
How long would tablet treatment after surgery go on for?
Why: NICE NG122 (1.6.14) says adjuvant osimertinib should be stopped at 3 years, or earlier if there is disease recurrence or unacceptable toxicity; knowing the end date at the start changes how a long course feels.
If I am having chemoradiotherapy and then surgery, when would the operation be?
Why: NICE NG122 (1.6.5) says that for people with stage 3a N2 disease having chemoradiotherapy and surgery, their surgery should be scheduled for 3 to 5 weeks after completion of the chemoradiotherapy, and explains that the wait is to give people time to recover.
What should I expect in the first weeks at home after a lung operation?
Why: Cancer Research UK says some breathlessness is normal after lung surgery, that this depends on the type of operation and on how fit you were beforehand, that some people improve as they recover while others have longer term problems, and that you can ask to be referred to a breathlessness clinic.

Locally advanced lung cancer that cannot be removed: chemoradiotherapy, then a year of immunotherapy

Why chemotherapy and radiotherapy together rather than one after the other?
Why: NICE NG122 (1.6.17) says to consider chemoradiotherapy for people with stage 2 or 3 disease whose condition is not suitable for surgery or who decline it, and to balance the potential benefit in survival against the risk of additional toxicities; the balance is the conversation.
Would I have immunotherapy afterwards, and what decides that?
Why: NICE NG122 (1.6.18) says durvalumab is recommended for treating locally advanced unresectable disease with PD-L1 expression on 1 percent or more of tumour cells if disease has not progressed after concurrent platinum-based chemoradiation, so the PD-L1 result and the scan after chemoradiotherapy together decide it.
If my tumour has an EGFR change, is there a different treatment after chemoradiotherapy?
Why: The corpus records the LAURA trial of osimertinib after chemoradiotherapy in unresectable stage 3 EGFR-mutant disease; ask your team what is funded for you now and whether a trial applies, because this is an area where practice has moved recently.
What are the warning signs of lung inflammation after this treatment, and who do I ring?
Why: Macmillan says durvalumab and pembrolizumab can cause inflammation of the lungs (pneumonitis) and to contact the hospital straight away on the 24-hour number for breathlessness, a cough that does not go away, wheezing, or a fever with a temperature over 37.5 C; Cancer Research UK says radiotherapy to the chest can also inflame the lungs soon after treatment.
If I cannot manage chemoradiotherapy, what else is there?
Why: NICE NG122 (1.5.9 and 1.5.10) says to consider radical radiotherapy, conventional or hyperfractionated, for people with stage 3a or 3b disease who are eligible and who cannot tolerate or decline chemoradiotherapy, while noting that some people who cannot tolerate chemoradiotherapy may not manage radical radiotherapy either.

What a biomarker result changes once the cancer has spread, and why waiting for it is usually right

Which genes were tested, and can I have the report?
Why: NICE NG122 (1.2.12) points teams to the National Genomics Test Directory for the sequencing panels used to guide treatment; the NHS explains how genomic testing on a tumour sample works and who sees the result. Asking which panel was sent is how you find out whether a gap is a negative result or an untested gene.
How long will the results take, and should we wait for them before starting treatment?
Why: For most people with newly diagnosed advanced non-squamous disease the molecular result changes the first treatment completely, so a short wait usually buys a better first choice; ask your oncologist how long yours will be, what would make them start sooner, and what they would start with.
Was enough tissue taken, and would a blood test speed things up?
Why: NICE NG122 (1.2.11) asks teams to ensure samples are adequate, without unacceptable risk to the person, to permit subtyping and assessment of molecular markers; where tissue is short, a blood test for tumour DNA can sometimes give an answer sooner, so it is worth asking whether one has been sent.
If a targetable change is found, what would the treatment be, and is it tablets or a drip?
Why: The record carries the targeted options by gene (EGFR, ALK, ROS1, KRAS G12C, BRAF, MET, RET, HER2 and NTRK); the practical difference between daily tablets at home and a regular hospital drip matters to how you plan your life, so ask early.
If nothing targetable is found, does that mean worse options?
Why: No: it means the route is immunotherapy, with or without chemotherapy, chosen by the PD-L1 score. NICE NG122 sets out separate treatment pathways for squamous and non-squamous disease with no targetable mutations at PD-L1 below and at or above 50 percent.

Which immunotherapy, and whether with chemotherapy, by the PD-L1 score

What is my PD-L1 score, and what does that number mean for what you are offering?
Why: NICE NG122's treatment pathways for advanced disease are organised around whether PD-L1 is below 50 percent or 50 percent or higher, for squamous and for non-squamous disease separately, so the number is the fork in the road.
Immunotherapy on its own, or with chemotherapy: which are you recommending for me, and why?
Why: A high PD-L1 score opens the option of immunotherapy alone, which is gentler; adding chemotherapy works faster and is often preferred when there is a lot of disease or symptoms are pressing. Ask which consideration is driving the recommendation in your case.
How long would immunotherapy go on for, and what happens when it stops?
Why: Checkpoint treatment is usually given for a fixed period rather than indefinitely, and Macmillan notes that immune side effects can start during treatment or after treatment ends; ask what the plan is at the end and what monitoring continues.
Which symptoms would make me ring you the same day?
Why: Macmillan says to contact the hospital straight away on the 24-hour number for breathlessness, a cough that does not go away, wheezing or a fever over 37.5 C (possible pneumonitis), for passing more stools than is normal for you or passing stools at night (possible colitis), and for a spreading rash, blistering or peeling skin with flu-like symptoms.
Do I get an alert card, and should I carry it?
Why: Macmillan says your team gives you a patient alert card for immunotherapy and 24-hour contact numbers for the hospital, and that you can call at any time of the day or night; the card is how an out-of-hours doctor knows to think of an immune reaction.

When a targeted drug stops working (resistance): the second biopsy and what comes next

How will we know the tablet has stopped working, and does one growing spot mean changing everything?
Why: Cancer that grows in one place while the rest stays controlled is sometimes treated locally, with radiotherapy to that spot, while the tablet continues; growth in several places usually means a change of treatment. Ask which pattern yours is.
Should I have another biopsy to find out why it stopped working?
Why: NICE NG122 (1.2.11) asks that samples be adequate to permit subtyping and assessment of molecular markers, and (1.2.13) that teams choose investigations giving the most information with the least risk to the person; a repeat sample can show a new resistance change or a change of cancer type, which in turn opens or closes options.
Can this be done as a blood test instead, and what would each test miss?
Why: A blood test for tumour DNA is easier and quicker but cannot show a change in the cancer's appearance under the microscope; a tissue sample can, at the cost of a procedure. Ask which question your team is trying to answer, because that decides which test is the right one.
What are the options after this drug, and in what order would you use them?
Why: The record carries the later-line options for lung cancer, including chemotherapy, antibody drug conjugates such as patritumab deruxtecan in the HERTHENA-Lung02 setting, and trials; knowing the order in advance makes each step less sudden.
Is a trial open to me at this point, and should I be referred before I am less well?
Why: The NHS says you can ask your doctor or a patient organisation about clinical trials you may be eligible to join; trials usually need you to be well enough to take part, so the referral is easier earlier than later.

Lung cancer that has spread to the brain

What symptoms would mean the cancer has reached my brain, and who do I ring?
Why: Cancer Research UK says cancer that has spread to the brain might cause memory problems, mood or personality changes, seizures, confusion, severe headaches often with sickness, or weakness of an arm or leg; these go to the team rather than being waited out.
Am I being offered steroids, and for how long?
Why: NICE NG122 (1.16.1) says to offer dexamethasone to people with symptomatic brain metastases and to reduce to the minimum necessary maintenance dose for symptomatic response; steroids help quickly but have their own effects, so the plan to reduce them matters as much as the plan to start.
Focused radiotherapy to the spots, or radiotherapy to the whole brain: which and why?
Why: NICE NG122 (1.16.2) points to the management of confirmed brain metastases in its brain tumours guideline rather than repeating it; NICE says of preventive whole-brain radiotherapy in small-cell disease that it can adversely affect quality of life, so asking what each option costs as well as what it buys is fair.
Does my targeted drug reach the brain, and could that be the treatment?
Why: Several of the modern targeted drugs recorded here were designed to cross into the brain, which can sometimes mean treating brain disease with tablets rather than radiotherapy; ask your oncologist whether that applies to your gene change.
Can I still drive?
Why: Driving after a seizure or a brain metastasis is governed by DVLA rules rather than by your team, so this is a question to put to them directly rather than a thing to assume either way; Cancer Research UK lists seizures and weakness of an arm or leg among the symptoms of cancer that has spread to the brain.

A clinical trial or standard treatment

Is there a trial open to me now, here or at another hospital, and what would it involve?
Why: The NHS says you can ask your doctor or a patient organisation if they know of any clinical trials that you may be eligible to join, and that Cancer Research UK's find a clinical trial service lists UK studies.
If I join, can I leave, and would standard treatment still be available?
Why: The NHS says you may decide to stop taking part if your condition is getting worse or you feel the treatment is not helping, and that you can also choose to leave at any point without giving a reason and without it affecting the care you receive.
How many extra visits, scans or biopsies would the trial need, and are travel costs covered?
Why: The NHS says trials can be time consuming, that you may be expected to attend a number of screening and follow-up sessions and some require an overnight stay, that some trials cover travel expenses, and that it is important to find out about the inconvenience and risks before signing up.
Would I definitely get the new treatment?
Why: The NHS explains that in most trials you are randomly assigned either to the treatment being assessed or to a control group given an existing standard treatment, or a placebo where no proven standard treatment exists; knowing that before you consent avoids a painful surprise.

When to talk about palliative care

Can I be referred to the palliative care team now, alongside my treatment?
Why: In lung cancer this is not a symbolic question: a randomised trial in newly diagnosed metastatic non-small-cell lung cancer (Temel 2010) found that people given early palliative care alongside standard oncology care had better quality of life, fewer depressive symptoms (16 against 38 percent), less aggressive care at the end of life and longer median survival (11.6 against 8.9 months).
What can the palliative care team help with that my cancer team cannot?
Why: Marie Curie says palliative care offers physical, emotional and practical support, that it can be offered at any point after a diagnosis, and that you can have it alongside treatments aimed at controlling the illness such as chemotherapy or radiotherapy.
Who do I ring out of hours when breathlessness or pain gets out of control at home?
Why: Macmillan says to ask your cancer doctor or specialist nurse who you should contact, how to contact them including at night, on bank holidays and at weekends, and when you should call for help or advice. Write the answer down before you need it.
What is available at home, in a hospice and in hospital, and how quickly?
Why: Cancer Research UK describes district and community nurses, community specialist palliative care nurses including Macmillan nurses, and Marie Curie nurses who give nursing care at home during the day or overnight to give carers a break; your GP can usually arrange a specialist nurse visit at home.
Can we write down what matters most to me, and who should be asked if I cannot speak?
Why: NICE asks teams to offer opportunities to discuss advance care planning, with support from family and carers if appropriate; writing it down is what makes it usable by an out-of-hours doctor who has never met you.

Respiratory physician appointment

What did the bronchoscopy or biopsy show, and is there enough tissue for all the tests?
Why: NICE NG122 (1.2.8) says to offer endobronchial ultrasound-guided transbronchial needle aspiration for biopsy of paratracheal and peri-bronchial intra-parenchymal lung lesions, and (1.2.11) that samples must be adequate to permit subtyping and assessment of molecular markers; a sample that was too small is a common and fixable reason for a delay.
What are my breathing test numbers, and what do they mean for treatment?
Why: NICE NG122 (1.4.9) says to perform spirometry and transfer factor testing before treatment with curative intent, and (1.4.13 and 1.4.14) describes shuttle walk testing with 400 m as a cut-off for good function and cardiopulmonary exercise testing with more than 15 ml/kg/minute as a cut-off, for people at moderate to high risk of breathlessness after surgery.
Is there fluid around my lung, and would draining it help my breathing?
Why: NICE NG122 (1.15.1) says to perform pleural aspiration or drainage in an attempt to relieve the symptoms of a pleural effusion, and (1.15.2) to offer talc pleurodesis to people who would experience long-term symptomatic benefit from aspiration or drainage.
Can I be referred to a breathlessness service, and is there a physiotherapist who can teach me the techniques?
Why: NICE NG122 (1.15.3 and 1.15.4) says to consider non-pharmacological interventions based on psychosocial support, breathing control and coping strategies, delivered by a multidisciplinary group coordinated by a professional with expertise such as a nurse, physiotherapist or occupational therapist, and that people should have access to this in all care settings.
I have COPD or another lung condition as well. How does that change the plan?
Why: The guideline's fitness assessment is built on lung function and exercise tolerance rather than on the diagnosis label, so the honest answer is a set of numbers; Asthma + Lung UK notes that lung function tests and scans do not always show how breathless you feel, which is worth saying out loud.

Thoracic surgeon appointment

Draw me what you are taking out and what will be left.
Why: NICE NG122 (1.5.1 and 1.5.2) distinguishes lobectomy from bilobectomy, pneumonectomy and bronchoangioplastic surgery, and says the more extensive operations are only for obtaining clear margins; a drawing turns those words into something you can repeat to your family.
What is my Thoracoscore or equivalent risk of dying from this operation?
Why: NICE NG122 (1.4.1) says to consider a global risk score such as Thoracoscore and to ensure the person is aware of the risk before they give consent for surgery.
Will you sample the lymph nodes, and how does that change what happens afterwards?
Why: NICE NG122 (1.5.3) says to perform hilar and mediastinal lymph node sampling or en bloc resection for all people having surgery with curative intent; what those nodes show decides whether chemotherapy is offered afterwards.
How long in hospital, how long with a chest drain, and how long before I can lift or drive?
Why: Cancer Research UK says some breathlessness is normal after lung surgery and depends on the operation and your fitness beforehand; the practical timeline is what lets you arrange help at home, so ask for it in weeks.
How many of these operations does this unit do each year?
Why: NICE NG122 (1.6.7) says centres performing lung resections for lung cancer should validate their data for the National Lung Cancer Audit, so volumes and outcomes are collected nationally; you are allowed to ask about them.

Oncologist appointment

What is this treatment for: cure, control or symptoms, and over how long?
Why: The NHS says your specialist treatment team will explain the treatments, the benefits and side effects, and work with you to make a plan; the aim of treatment belongs at the top of that conversation.
Which side effects should make me ring the 24-hour line, and which can wait until the next clinic?
Why: Macmillan's drug pages set the thresholds: a temperature above 37.5 C or below 36 C or feeling unwell with a normal temperature, breathlessness or a new cough, loose stools three or more times a day, unexplained bruising or bleeding, and any spreading or blistering rash.
How will we know if it is working, and when is the first scan?
Why: Agreeing the scan interval in advance turns a wait into a plan; NICE NG122 (1.19.1) says to offer an initial follow-up appointment with a specialist within 6 weeks of completing treatment and regular appointments after that, rather than relying on the person requesting them when they have symptoms.
What would make you stop this treatment, and what would come next?
Why: Knowing the stopping rule protects the time you have; NICE NG122 (1.12.2) shows the same principle for small-cell disease, where it asks teams to inform people whose disease has not responded to first-line treatment that there is very limited evidence that second-line chemotherapy will be of benefit.
What is my follow-up after treatment, and who runs it?
Why: NICE NG122 (1.19.2) says to offer protocol-driven follow-up led by a lung cancer clinical nurse specialist as an option for people with a life expectancy of more than 3 months.

Genomics appointment

Is this a test on the tumour or a blood test for something inherited?
Why: The NHS explains the difference between genetic and genomic testing and what each can show; most lung cancer testing is on the tumour and says nothing about your children, which is worth hearing plainly.
Which panel was sent, and does it cover all the genes with a treatment attached?
Why: NICE NG122 (1.2.12) refers teams to the National Genomics Test Directory for the sequencing panels used to guide treatment; the directory changes, so the honest question is which version was used for your sample.
What are the possible results, including one that is uncertain, and what would each mean?
Why: A variant of uncertain significance is a common outcome and changes nothing on its own; asking in advance prevents a frightening letter later.
If the sample was not good enough, what happens next?
Why: NICE NG122 (1.2.11) asks teams to take samples adequate for molecular markers without unacceptable risk to the person; an inadequate sample means either a repeat procedure or a blood test, and both take time you should know about.

Palliative care appointment

What can you help with while I am still having cancer treatment?
Why: Marie Curie says palliative care can be given alongside treatments, therapies and medicines aimed at controlling your illness, and covers symptoms, emotional, spiritual and practical support for you and for the people close to you.
Can you help with my breathlessness specifically?
Why: NICE NG122 (1.15.3) says to consider non-pharmacological interventions based on psychosocial support, breathing control and coping strategies for people with breathlessness, and (1.15.5) to consider opioids such as codeine or morphine to reduce cough.
What help is there at home, and how fast can it start?
Why: Cancer Research UK describes district nurses, community specialist palliative care nurses and Marie Curie nurses who visit at home during the day or overnight, and says availability varies by area, so ask what exists where you live.
What support is there for my family, and for children at home?
Why: Marie Curie says palliative care may also support the people close to you, including friends, family and carers, who may be able to speak with professionals offering practical and emotional support; Maggie's centres are open to family and friends as well.
What help is there with money, benefits and equipment?
Why: Cancer Research UK says practical things such as benefits, sick pay, prescription costs, grants, work issues, Blue Badge applications, help with travel costs and changes to the house can all be supported, and that getting help early stops them becoming a bigger issue later.

For carers

What should I watch for at home, and which number do I ring first?
Why: Every red card here starts with the hospital's 24-hour number; Macmillan says to ask the cancer doctor or specialist nurse who to contact, how to contact them at night and at weekends, and when to call.
Can I come to appointments and write down what is said?
Why: Cancer Research UK says to make a list of questions before the appointment and to take someone with you to support you, remind you what you wanted to ask and help you remember the information given.
What do I do when they are frightened and breathless and I cannot fix it?
Why: Cancer Research UK's breathing advice is something a carer can do too: point a handheld fan at their face, help them into a supported forward lean position, and coach long, relaxed breaths out until the breathing settles; Macmillan has a section specifically on looking after someone with breathlessness.
Am I entitled to a carer's assessment, and to any benefits?
Why: The NHS says you are a carer if you look after someone regularly because they are ill, that washing, dressing, medicines, travel to appointments, shopping, bills and simply sitting with someone all count, and that you can ask adult social services at your local council for a carer's assessment; it also lists the benefits carers may claim.
Who supports me?
Why: Roy Castle runs a telephone line staffed by lung cancer nurses, face to face groups and an online community; Maggie's centres are free, need no appointment and are open to family and friends as well as to patients.
How do I talk about smoking without it becoming an argument?
Why: NICE NG122 (1.3.2) frames stopping smoking as advice given with a reason, not a condition of treatment, and (1.3.3) says surgery is not postponed to allow it; naming it as one more thing the team offers, rather than something owed to you, keeps the conversation about the treatment.

Newly diagnosed? Read the first 60 days with Lung cancer, then print the one-page appointment sheet with room for the answers.

Print this page for your appointment (your browser's print command). These prompts are for discussion; your clinical team knows your case.

Cancers·Lung cancer (all types)