Lung Cancer

Your body is built from tiny building blocks called cells. You have trillions of them, and they do different jobs depending on where they are.

Your lungs take oxygen out of the air you breathe and pass it into your blood. Air travels down your windpipe, into two large tubes called bronchi, one for each lung, then into smaller and smaller tubes, and finally into millions of tiny air sacs where the oxygen crosses into your bloodstream.

Lung cancer happens when cells lining those tubes or sacs start growing when they should not, and keep going.

Your right lung has three sections, called lobes, and your left lung has two. Where the cancer sits, and which lobe it is in, affects what treatment is possible.

You will also hear about lymph nodes, which are small glands scattered through your body that filter fluid and help fight infection. There are a lot of them in the middle of your chest, and whether any of them contain cancer cells is one of the most important things your doctors will work out.

Here is the thing that surprises most people. Lung cancer is not one illness. There are two main families and several types within them, and they are treated in completely different ways. That is why so much of what you have read this week may not apply to you at all.

Lung cancer is not only a smoker's illness. Around one in five people diagnosed with lung cancer have never smoked at all. In that group, the kind of genetic changes that have matched medicines are especially common, which makes proper testing even more important. If you have never smoked and are struggling to believe this diagnosis is right, it can be right.

Blaming yourself will not help you and nobody who treats you is doing it. If you did smoke, the people looking after you are not interested in that. They are interested in your scan and your test results. Many people who smoked never get lung cancer, and many people who never smoked do. What you did years ago has no bearing on what treatment you deserve or how hard the people looking after you will work for you.

You cannot catch lung cancer and you cannot give it to anyone. It is not caused by a germ and does not pass between people. If you have been coughing, people around you may quietly wonder. Tell them. You do not need to keep any distance from your family.

Lung cancer splits into two main families.

• Non small cell lung cancer is about eight in ten cases. Within it there are types called adenocarcinoma, squamous cell carcinoma and large cell carcinoma. This is the family where testing and targeted treatment have changed things most.
• Small cell lung cancer is less common and behaves differently. It responds quickly to chemotherapy and to treatments that include immunotherapy, and it is treated on a faster timeline.

Now the part that matters most, and that many people are never properly told.

Your tumour will be tested for specific faults inside its genes. Genes are the instructions inside cells telling them what to do, and when one of those instructions goes wrong it can be what is driving the cancer.

This is called molecular testing, or biomarker testing, or next generation sequencing. Different hospitals use different names for the same thing.

It matters because when a fault is found, there is often a medicine built specifically for it, and many of those are daily tablets taken at home rather than treatment through a drip. For people with a match they usually work better than chemotherapy and are far easier to live with.

Complete testing opens doors. Partial testing quietly closes them. A tablet that would have suited you perfectly does nothing if nobody looked for the thing it targets.

You may not have these results yet, and that is completely normal. They usually take one to two weeks after your biopsy. If nobody has told you, ask whether the testing has been ordered at all.

Most people find out they have lung cancer from someone who does not treat it. A family doctor calling about a chest scan. A doctor in an emergency department. A pulmonologist, which is a lung doctor, who did the test that found it.

Those people did exactly the right thing. They are not who looks after you from here.

Lung cancer usually involves more than one main doctor.

• A medical oncologist handles everything that comes as medicine. Chemotherapy, targeted tablets, immunotherapy. An oncologist is simply a cancer doctor. For most people this is who coordinates the whole plan.
• A thoracic surgeon operates on the lung, if surgery is part of your treatment.
• A radiation oncologist plans and gives radiation.

Here is the part that matters, and it is why this page exists. All of these doctors hold the same qualifications as each other, and from the outside they look the same. Some treat lung cancer among many other cancers. Others have built an entire career on it.

With lung cancer that difference shows up in the first fortnight, in a way you would never notice at the time.

If you already have an appointment with someone, that is good. Keep it. Nothing here means cancelling anything. It means knowing what to ask for, and knowing you are allowed to be seen somewhere else as well.

If you feel very unwell right now, before you have seen anyone, do not wait for an appointment. Go to your nearest emergency department and tell them at the desk that you have just been diagnosed with lung cancer.

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Reason 1. A Specialist Orders the Full Testing.

With most cancers the first big decision is about surgery. With lung cancer it is about testing, and it happens in the first few days, often before you have taken any of this in.

Studies have repeatedly found that a large share of people with lung cancer never receive complete molecular testing. Not because anyone did anything wrong, but because a smaller panel was ordered, or the sample was too small, or the results came back after treatment had already started.

That means some people never learn a medicine existed that was built for their exact tumour.

A lung cancer specialist orders the full panel as a matter of habit, before choosing anything. They also wait for it, which sounds simple and is the part that takes confidence.

A doctor who sees lung cancer occasionally may order a smaller set. That is not carelessness. It is what you do when you have not watched those results redirect treatment again and again.

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Reason 2. Your Test Results Choose Your Medicine.

This is the part most people have never heard.

If your tumour has a fault in a gene called EGFR, there is a tablet built for EGFR. If it has one called ALK, there is a tablet for ALK. The same is true for ROS1, BRAF, RET, MET, NTRK and KRAS G12C.

For people with a match, these usually work better than chemotherapy and are far easier to live with. Most are taken at home once or twice a day.

There is also a protein called PD-L1, reported as a percentage. It helps predict how well immunotherapy will work for you. Immunotherapy works by helping your immune system, which is your body's own defence force, recognize the cancer. A high PD-L1 number can mean immunotherapy alone is enough. A lower one usually means combining it with chemotherapy.

None of this is unusual or experimental. It is ordinary lung cancer care now.

But every one of those options depends on somebody having tested for it first.

Reason 3. Not Enough Tissue Is a Problem a Specialist Solves.

Here is a situation that comes up constantly and that almost nobody is told about.

Lung biopsies are often small. Getting to a tumour inside the chest is not easy, and sometimes the sample is enough to say what the cancer is but not enough to run the full molecular panel on it.

At that point there is a fork in the road.

One option is to carry on anyway with partial information. It is quicker. It also means treating without knowing what you are treating.

The other option is to get more. That might mean a second biopsy, or a blood test that looks for the same genetic faults floating in the bloodstream, sometimes called a liquid biopsy.

A lung cancer specialist takes the second path almost every time. They know the extra week is worth it, and they know which technique is most likely to get enough tissue.

If you have been told there was not enough tissue for full testing, that is the moment to ask what happens next. The answer should not be nothing.

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Reason 4. Four Things Specialists Do That Others May Not.

They get the order right. Immunotherapy before surgery. Chemotherapy after. Radiation combined or separate. These orderings come from recent studies, and someone working at the front of the field applies them without having to look them up.

They take your case to a tumour board. That is a meeting where surgeons, medical oncologists, radiation oncologists and pathologists discuss cases together. Lung cancer benefits from this more than most, because the choice between surgery and radiation is genuinely close in some situations.

They retest when things change. If a targeted tablet stops working after a year or two, testing again often finds a new fault with a new matched medicine. That step gets missed outside specialist care.

They are honest about surgery. A specialist will tell you when a very precise form of radiation would serve you as well as an operation. Surgical volume matters too, so it is fair to ask a surgeon how many lung operations they do each year.

Reason 5. How We Pick the Doctors on This Site.

Every lung cancer doctor on Cancerify is checked against a strict, published set of standards before we add them. We look at published research, work on clinical trials, professional recognition, leadership roles and awards.

Most of all, we look at whether that record is about lung cancer specifically rather than spread thinly across many cancers. Those are not the same thing, and that distinction is the whole point.

Doctors can never pay to appear here, and neither can hospitals. We are not connected to any hospital or practice, and no money changes hands.

We do this so you do not have to spend the hardest week of your life trying to work out who is who.

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Almost everyone newly diagnosed with lung cancer should get a second opinion. Not sometimes, and not only if something feels wrong. Almost everyone. It simply means having a different doctor look at your case and tell you what they think.

It is not rude and nobody will be offended. Doctors arrange second opinions for their own family members. If a doctor seems bothered that you want one, that is useful information about them.

Here is the part nobody tells you. Who gives the second opinion matters more than the fact of getting one.

If you see a second general cancer doctor, you may simply get the same answer twice. Two doctors who each treat a handful of lung cancer patients a year can easily miss the same thing, because they are working from the same general knowledge. That is the first opinion repeated, not a second opinion.

In lung cancer a second opinion has one very specific use beyond reassurance. It is a chance to have your molecular testing checked for completeness. If your testing looked at only a handful of genes, a specialist centre will usually recommend broader sequencing. If your sample was small, they may know ways to get more from it.

That is why we built Cancerify. Not to help you find a second doctor, but to help you find the right one.

When you arrange it, ask your current team to send on these things.

• Your pathology report
• Your molecular or biomarker report, if you have one
• Your CT and PET scans on a disc
• Your lung function test results
• Your treatment plan in writing

If you have not been given a molecular report at all, that itself is the question to take with you.

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• Bring someone with you. Not just for support, though that helps, but for memory. Almost nobody remembers more than a small part of a first appointment.
• Bring your results, or check they were sent ahead. Pathology, any molecular report, and your scans on a disc.
• Write your questions down and put the most important one first.
• Ask if you can record it. Most doctors say yes, and playing it back later is worth more than any notes.
• Ask for the plan in writing. At the very least get your exact type written down and whether full molecular testing has been ordered.

• A medical oncologist handles chemotherapy, targeted tablets and immunotherapy, and usually coordinates the whole plan.
• A thoracic surgeon operates on the lung. How often they do this matters more here than in many operations, so it is fair to ask about numbers.
• A radiation oncologist gives radiation, including a very precise kind called stereotactic radiation that can sometimes treat a small tumour without surgery at all.
• A pulmonologist, a lung doctor, often made the diagnosis and did the bronchoscopy, which is a thin camera passed down into the airways to take samples.
• A pathologist and a molecular pathologist write the reports your whole plan rests on.
• A lung cancer nurse specialist is often the person you speak to most. They answer the questions you think are too small to bother a doctor with, and none of them are.

Your pathology report says what the cells are. Type, subtype and grade.

Your molecular report says what is driving them. This is where your treatment options live, and it is the one people are most often never shown.

Here is what the main lines mean.

• EGFR, ALK, ROS1, BRAF, RET, MET, NTRK, KRAS G12C. Genetic faults inside the tumour. When one is found there is often a medicine built for it, frequently a daily tablet.
• PD-L1, reported as a percentage. Helps predict how well immunotherapy will work for you.
• Adenocarcinoma or squamous cell. The cell type, which affects which treatments suit you.

If your report only lists two or three genes, ask whether broader testing is possible. Small panels are still common and they miss things.

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• Week one. Your biopsy results come back with the type. You are referred to a lung cancer specialist. Scans are booked if you have not had them.
• Week one to two. A PET scan, which highlights areas of higher activity in the body, and often an examination of the lymph nodes in the middle of your chest. Lung function testing is usually done around now too, measuring how well your lungs work, which affects what treatments suit you.
• Week two to three. Molecular results come back. This is the wait that frustrates people most, and it is the most important part of your workup. It is normal for it to take this long.
• Week three to four. The plan is put together, ideally after your case has been discussed at a tumour board.

If your first biopsy did not give enough tissue for full testing, you may be asked to have another one, or a blood test that looks for the same faults. That is not a setback. It is your team refusing to guess.

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Staging describes the size and position of the tumour, whether lymph nodes are involved, and whether cells have travelled beyond the chest.

The staging work usually involves a CT scan, a PET scan, and often a look at the lymph nodes in the centre of the chest using a camera. That last step matters more than it sounds, because it frequently changes the plan.

Lung function testing is part of it too. How well your lungs work now affects whether surgery is suitable and what kind.

Earlier stages usually mean surgery leads, sometimes with treatment before or after it. Later stages usually mean medicine that travels through the whole body leads instead.

That second path is where the most has changed, and it is where your molecular results do their work.

Most of what comes up can wait for your next appointment. This is the short list that cannot.

Chemotherapy lowers your white cells, which are the ones that fight infection. While they are low, an infection that would be minor for anyone else can become serious quickly.

Call your team straight away, at any hour, if you have any of these.

• A temperature of 100.4°F (38°C) or higher. This is the single most important number in your treatment. Do not wait until morning, and do not take paracetamol or acetaminophen first, because that hides it. Every cancer centre treats fever during chemotherapy as an emergency.
• Shaking chills, even if your temperature reads normal.
• Coughing up more than a streak of blood.
• Breathlessness that is new or suddenly worse, or chest pain. This one is easy to dismiss with lung cancer because breathlessness feels expected. Do not dismiss a sudden change.
• Swelling of your face, neck or arms, or veins standing out on your chest.
• New severe back pain, especially with weakness, numbness or tingling in your legs, or trouble controlling your bladder or bowel. This needs attention within hours.
• Being unable to keep fluids down for more than a few hours.

If you are on immunotherapy, also call for diarrhoea of several loose stools a day, a new rash spreading quickly, or a new dry cough with breathlessness. These are treatable, and they are much easier to treat early than late.

Your team should give you a number to call at any time. If nobody has given you one, ask at your next appointment. If you cannot find it, go to your emergency department and tell them at the desk that you have lung cancer and are having treatment. Say it in those words, because it changes how quickly you are seen.

Nobody will think you are overreacting.

There is no food that cures lung cancer, and no diet that replaces treatment. Anyone selling you one is selling you something.

The goal is usually to keep weight on, not take it off. This surprises almost everyone. Weight loss is common with lung cancer and it makes treatment harder to get through. If you have spent years being told to eat less, that advice may be the opposite of what you need now.

Sugar does not feed cancer the way the internet says. Every cell in your body uses sugar, including healthy ones, so cutting it out does not starve anything except you. This myth causes real harm, because people stop eating properly at exactly the point they need to eat well.

Small and often works better than three meals. If eating a full plate feels impossible, it usually is. Several small things across the day get more in than one meal you cannot face.

Ask for a dietitian. Most cancer centres have one and most people are never offered one.

Tell your team every supplement and herbal remedy you take. Some can stop your treatment working properly, and this is particularly true of targeted tablets. Bring the actual bottles.

The question you are dreading

Lung cancer comes with something other cancers do not. People ask whether you smoked.

You owe nobody that answer. It is nobody's business, and the question is usually asked out of nervousness rather than judgement, though it rarely feels that way.

If you want a line ready, this one works. "That is not really what matters right now. What is happening is this, and here is the plan."

Then change the subject. You are allowed to.

If it does bother you, say so plainly to someone you trust. A lot of people carry shame about this diagnosis that they never say out loud, and it makes everything heavier than it needs to be.

Telling family and friends

Saying your specific type out loud helps. There is a big difference between saying lung cancer and saying a type with a genetic fault that has a targeted tablet.

Decide who needs to know now and who can wait. You do not have to tell everyone at once, and you do not have to tell everyone at all.

If you work, you do not have to tell your employer your diagnosis, only what you need practically. Your team can write to them without naming anything you would rather keep private.

If there are children in your life, telling them something true in simple words works better than saying nothing. Children notice, and what they imagine is almost always worse than what is actually happening. Telling them they cannot catch it matters too.

Why talking about it helps

A lot of people try to carry this quietly, either to protect their family or because talking makes it feel more real. That is completely understandable, and it tends to make things harder rather than easier.

Feeling frightened, angry, numb, or nothing at all is normal. So is being fine one hour and not fine the next. None of that means you are coping badly. It means something enormous has happened.

Talking does not fix the cancer, and it is not meant to. What it does is stop the same thoughts going round on their own at three in the morning.

Talking to someone professional

Most cancer centres have a counsellor or psychologist who works only with people who have cancer, and in most places this is free. Very few people are told about it, so you usually have to ask.

You do not need to be in crisis to see one. Plenty of people go simply because they want somewhere to say things they would not say to their family.

Ask your lung cancer nurse specialist, who will usually know exactly who to contact.

If you find yourself feeling very low, hopeless, or not wanting to go on, tell your team. Say it plainly. They will take it seriously and they will not be shocked, because they have heard it many times and they know how to help.

Support groups, and why they are different

Friends and family love you, and they cannot know what this is like. That is not a criticism of them.

A support group is different because everyone in the room has been where you are. Practical things get shared that no leaflet contains. What that treatment actually felt like. What helped with the breathlessness. What to say when someone asks whether you smoked.

A few things worth knowing.

• Look for a group that matches your situation. What is useful for someone on a targeted tablet is quite different from what is useful for someone having chemotherapy.
• There are groups specifically for people who never smoked. If that is you, they exist and many people find them a relief.
• Ask your hospital first. A group attached to a treatment centre tends to be better informed than a general online forum.
• Online groups can be excellent, and they can also be frightening. People tend to post when things are difficult, so what you read is not a fair picture. If a group leaves you feeling worse each time, leave it. That is not giving up.
• Groups for family and carers exist too.

You do not have to do any of this in the first week. But it is worth knowing it exists, because a lot of people find out about it a year in and wish they had known sooner.