Ruth realised that there was not enough information available for patients diagnosed with non-smoking lung cancers, and that there was a clear need for greater collaboration and research into these types of lung cancers. We hope that the information provided below will empower you to better understand your diagnosis and the disease, and help you know what questions to ask your specialists.
Patient Information
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Introduction
UNDERSTANDING NON-SMOKING LUNG CANCERS
If you have been diagnosed with lung cancer and have never smoked, it can be difficult to understand how this has happened. While smoking is the biggest cause of lung cancer, people who have never smoked can develop lung cancer too.
ANYONE WITH LUNGS CAN GET LUNG CANCER
Non-smoking lung cancers & what you should know about them
We hope that the information provided below will help you gain a better understanding of the possible drivers behind non-smoking lung cancers and, most importantly, offer guidance on the questions you could ask your oncologist so that you can be given the best possible course of treatment – no matter what stage your cancer is.
With huge thanks to Professor Sanjay Popat, Consultant Thoracic Medical Oncologist at The Royal Marsden Hospital NHS Foundation Trust, for helping us put together this clear and comprehensive guide.
We hope it empowers you to ask the right questions, helping you better understand this complex disease and ensuring you receive the most effective treatment.
Terminology
Throughout this guide, we use two terms to describe people who have never smoked and are diagnosed with lung cancer: never-smoking lung cancer and non-smoking lung cancer.
Both terms mean the same thing.
”Understanding cancer & medical terminology can be very confusing. We hope to simplify some of the basic lung cancer terminology here, helping you to understand your diagnosis, enabling you to ask important questions along the way. You can also download the booklet below to highlight key information, note anything that is unclear, and write down questions to take to your next oncologist appointment."
Deepa DoshiDirector of Services
Diagnosis FAQs
NON-SMOKING LUNG CANCERS: QUESTIONS YOU MAY HAVE
What are non-smoking lung cancers?
LUNG CANCER TYPES, SUBTYPES AND STAGING
Smokers and non- or never-smokers tend to develop different types of cancer as a result of genetic mutations or abnormalities. A non-smoker is someone who does not currently smoke but may have smoked around 75 cigarettes at some point in their life. Never-smokers are people who have never smoked or smoked fewer than 75 cigarettes in their lifetime.
Our focus, and the Ruth Strauss Foundation’s mission, centre on lung cancers not caused by smoking.
Non-smoking lung cancer tumours differ from smoking-related lung cancers in their origins and the genetic drivers.
To determine whether you have lung cancer, your medical team will carry out tests such as a chest X-ray, CT scan or biopsy. These tests help identify the type and subtype of lung cancer you have, as well as the stage of your cancer. This information enables your oncologist to plan the most appropriate treatment for you.
TYPES OF LUNG CANCER
What type of lung cancer do I have?
Cancer that begins in the lungs is called primary lung cancer. When cancer cells have spread to a patient’s lungs from a cancer that started somewhere else in the body, it’s called secondary lung cancer. This guide is for patient’s diagnosed with a primary lung cancer.
THERE ARE TWO TYPES OF LUNG CANCERS:
NON-SMALL CELL LUNG CANCER (NSCLC)
Around 80% of lung cancer diagnoses are non-small cell lung cancer. In most cases, non-smokers develop non-small cell lung cancer. In the ‘subtype’ section, we will therefore focus on this type of non-smoking lung cancer.
SMALL CELL LUNG CANCER
Around 20% of lung cancer diagnoses are small cell lung cancer, and these are extremely rare in non-smokers.
Did you know?
These names, small cell and non-small cell lung cancer, were adopted in the 1960s when oncologists (doctors who diagnose and treat cancer) needed to know which form of lung cancer they were dealing with for treatment purposes. The term non-small cell lung cancer originally derived from how these tumour cells appeared under the microscope.
Types of Cancer
WHAT SUBTYPE OF LUNG CANCER DO I HAVE?
There are many subtypes of non-small cell lung cancer, but scientists have identified two major subtypes.
With 80% of non-smoking lung cancers being non-small cell lung cancers, our focus below will be on the two key subtypes of this cancer type: adenocarcinoma and squamous carcinoma. About 50% to 60% of lung cancers found in people who never smoked are adenocarcinomas. About 10% to 20% are squamous cell carcinomas.
ADENOCARCINOMA
An adenocarcinoma is a type of cancerous tumour that starts in cells that release substances such as mucus. These tumours are usually found in the outer parts of the lung.
SQUAMOUS CARCINOMA
A squamous carcinoma is a type of cancerous tumour that forms in the thin, flat cells lining the inside of the lungs.
Did you know?
Anyone who has smoked fewer than 75 cigarettes in their lifetime is considered a non-smoker. We use two terms to describe people who do not smoke and are diagnosed with lung cancer: never-smoking lung cancers and non-smoking lung cancers. Both mean the same thing.
Stages of Cancer
WHAT STAGE IS MY CANCER?
Cancer staging is the process of determining the extent to which a cancer has developed (the tumour’s size) and spread.
Simply put, a patient’s cancer stage is determined by how much cancer is present in the body. Below we have broken it down into simple terms, but more information is available here.
DETERMINING THE CANCER STAGE HELPS AN ONCOLOGIST DECIDE ON THE BEST COURSE OF TREATMENT, WHICH CAN INCLUDE:
- Surgery
- Radiotherapy
- Drug treatments (e.g. chemotherapy, immunotherapy, etc.)
- Targeted therapies
”In an ideal world, you are given all the information about your cancer in one go and there is a clear plan of action. Unfortunately, it’s often not so straight forward. To start with, receiving the news that you have cancer will come as an incredible shock, which means that you probably won’t absorb all the details that were shared with you. A second consultation will allow you to ask further questions. In addition, once a cancer diagnosis is made, further steps need to be taken to find out more about your cancer. For non-smoking lung cancers it is vital that a biopsy is taken and send off for molecular testing.”
Professor Sanjay PopatRSF Scientific Advisor
Where To Go From Here
WHAT’S NEXT?
Finding out the driver behind your cancer
Step 1 of diagnosis is finding out your type, sub-type and stage of your cancer.
Step 2 is finding out what the driver is behind your cancer. If this can be determined, a more targeted and tailored treatment plan can be put together for you. All of this information (type, subtype and driver) can, in most cases, be found by pathologists examining the tumour.
The driver behind non-smoking lung cancers is in most cases a gene mutation or alteration. In simple terms, this is a change or malfunction in your DNA’s building blocks. It is not always possible to find the driver, but through comprehensive molecular testing (study of your biopsy), specialists have a better chance of finding it.
MOLECULAR PROFILING
HOW MOLECULAR PROFILING HELPS GUIDE YOUR TREATMENT
A human body is made up of cells. Each cell contains the complete instructions to develop, survive and reproduce. Genes are small sections of DNA. Some genes act as instructions to make molecules called proteins. Proteins make up body structures such as organs and tissues, as well as control chemical reactions and carry signals between cells. If a cell’s DNA is mutated (a change in a DNA sequence), an abnormal protein may be produced, which can disrupt the body’s usual processes and lead to a disease such as cancer.
Due to major advances in the mapping of the human genome, we now know what human genes look like and can therefore identify abnormalities or changes in our genes. It is these gene alterations that help a cancer grow and spread. Knowing which gene alteration a tumour carries allows oncologists to better determine which drugs a patient may benefit from. The process of analysing a patient’s genes is called molecular profiling.
Note: it is not the person’s genes (i.e. genetics) that are abnormal, but the cancer’s genes that are abnormal. We do not know what triggers the cancer genes to become abnormal in a never-smoker. Finding the causes of these gene alterations is an active area of research.
YOUR CANCER’S GENETIC PROFILE AND WHY THIS IMPACTS TREATMENT
Understanding the genetic profile of the cancer helps oncologists work out the most appropriate treatment for a patient.
Molecular profiling has become fundamental not only in informing a patient’s tumour diagnosis and prognosis (outlook), but most importantly, this unique information can help your oncologist personalise your treatment plan by considering which treatments your cancer is likely to respond to.
GENE MUTATIONS FOUND IN NON-SMOKING LUNG CANCER
ALK REARRANGEMENT
ALK is the name of a protein whose role is to tell cells to stop growing. If you have been diagnosed with ALK+ lung cancer, this gene and another gene break off and rearrange, preventing it from carrying out its function of stopping cells from growing.
ROS1 FUSION
ROS1 is the name of a protein that functions in a similar way to the ALK gene. If you have been diagnosed with ROS1+ lung cancer, this gene has fused with a nearby gene. This “drives” abnormal cell growth.
EGFR MUTATION
EGFR is the name of a protein that instructs cell growth and division. EGFR+ lung cancer means that this gene has mutated (changed), causing cancer cells to grow and spread.
RET FUSION
The RET gene provides instructions for producing a protein that is involved in signalling within cells and appears essential for the normal development of several kinds of nerve cells. If you have been diagnosed with RET fusion lung cancer, this gene “drives” abnormal cell growth.
BRAF MUTATION
The BRAF gene provides instructions for making a protein that helps transmit chemical signals from outside the cell to the cell’s nucleus (its core). BRAF mutations affect the growth, division, specific functions, movement, and self-destruction of cells.
KRAS MUTATION
The KRAS gene provides instructions for making a protein that relays signals from outside the cell to the cell’s nucleus (its core). When mutated, KRAS can affect cell division, cell differentiation, and the self-destruction of cells, with the potential to cause normal cells to become cancerous.
Did you know?
A biopsy involves removing a small piece of the tumour for analysis to:
1. Confirm the cancer type
2. Identify the abnormal gene behind the cancer
GENOMIC TESTING AND MOLECULAR PROFILING
Comprehensive genomic testing can determine whether cancer tissue contains specific genetic changes. This vital information helps an oncologist choose the most appropriate and effective treatment for you.
WHAT IS MOLECULAR PROFILING?
Molecular profiling, also known as tumour genomic profiling, is a type of genomic testing used in cancer care. It examines the genes within cancer cells to look for mutations – abnormal changes in the cancer’s DNA – that may be driving the cancer’s growth.
Molecular profiling is usually carried out using a biopsy or, in some cases, a blood test. The results can help doctors understand the cancer better and identify treatments that are more likely to work for you.
DIAGNOSED WITH LUNG CANCER BUT NO MOLECULAR ABNORMALITY DETECTED?
If you have been diagnosed with lung cancer but no molecular abnormality has been detected, we advise you to:
- Request that any remaining cancer biopsy material is sent to an NHS Genomic Laboratory Hub (GLH) for comprehensive testing of all eight genes (find out more in the section below about the UK’s GLHs).
- If there is no remaining tissue from the original biopsy, ask whether another biopsy can be carried out when it is safe to do so, and request that it is sent to an NHS GLH for comprehensive testing of all eight genes.
”The genomic abnormality behind your cancer may not be druggable, even if you find out what it is, but at least you know what you are dealing with and a best course of treatment can be prescribed.”
Professor Sanjay PopatRSF Scientific Advisor
HOW GENOMIC TESTING HAS CHANGED
Up until just a few years ago, scientists were only looking for a small number of genetic abnormalities in patients’ biopsy samples. In 2007, testing of the EGFR gene began, followed by the identification of additional gene mutations in the years that followed.
Over the past decade, genomic testing has evolved significantly. Initially, tests were carried out in local hospitals or laboratories. However, in 2018, NHS England decided to centralise genomic testing into seven Genomic Laboratory Hubs (GLHs) in England. This was followed by the introduction of the Genomic Medicine Service (GMS) in 2019, with the aim of providing consistent and fair access to genomic testing across the country.
The GMS is a nationally funded laboratory service for cancer patients in England, ensuring equitable access to genomic testing for both clinicians and patients. Similar systems are in place in Scotland, Wales and Northern Ireland.
Every patient diagnosed with lung cancer should have their tumour sample sent for comprehensive molecular testing. In England, the NHS funds testing of eight genes using a technique known as Next Generation Sequencing Test.
Comprehensive molecular testing is one of the most important steps in identifying the molecular abnormality that may be driving your cancer. You have the right to have your cancer tested for these eight genes. Identifying the driver behind your cancer can help your oncologist select the most effective treatment for you.
GLH Networks
GENOMIC LABORATORY HUB (GLH) NETWORKS
The Future
AFTER DIAGNOSIS
What does treatment for non-smoking lung cancers look like?
Below, we share some general guidance on how non-smoking lung cancers at different stages may be treated. However, every person’s cancer is unique, and treatment plans are always tailored to the individual.
In general, stage I and II non-smoking lung cancer is treated with surgery to remove the cancer.
Surgery may be followed by chemotherapy to reduce the risk of relapse (i.e. the cancer returning). Depending on the molecular profile of your cancer, your oncologist may also recommend targeted treatment, often taken as a tablet, to further reduce the risk of the cancer coming back.
For example, if the abnormal gene detected is EGFR, you may be recommended an EGFR inhibitor tablet such as osimertinib. If your non-smoking lung cancer shows an ALK gene alteration, there are currently clinical trials exploring whether an ALK inhibitor, such as alectinib, may be beneficial after surgery.
We are working on sharing more information about clinical trials for non-smoking lung cancer in the near future.
Stage III non-smoking lung cancer is a complex disease, with many different subtypes, and treatment approaches can vary depending on the individual situation.
If you have been diagnosed with stage IV non-smoking lung cancer, it is essential to understand the molecular profile of your cancer before starting treatment, wherever possible. Molecular profiling can directly influence which treatments you are eligible to receive. The way NHS drug funding works means that once a treatment pathway has begun, future treatment options may be limited by what has already been given.
In some cases, starting treatment before molecular profiling is complete can affect which treatments are available later on. Your oncology team will guide you on the best timing and approach for your care.
NOTE: Molecular profiling may not always lead to an immediate change in treatment, particularly if no targeted therapy is available. However, it may help identify eligibility for research studies or clinical trials that are currently ongoing.
TREATMENT OPTIONS
Treatment often comprises a combination of drugs and therapies, also referred to as modalities. The use of different modalities together is called a multi-modality approach.
Here are some of the more common treatment combinations used at this stage:
1. Chemotherapy + radiotherapy (called chemoradiation)
2. Chemotherapy + radiotherapy + surgery
Often, an oncologist will prescribe up to one year of immunotherapy following the above treatment course to reduce the risk of relapse.
However, there is evidence suggesting that immunotherapy may be less effective in patients with certain genetic alterations, such as EGFR mutations. Knowing your cancer’s molecular profile allows you to discuss with your oncologist whether this is the right treatment pathway for you.
As mentioned earlier, comprehensive molecular profiling can also allow a patient to be considered for research trials, with the potential to access new treatments.
When cancer starts in the lung and has spread to other parts of the lung or to other parts of the body, treatment is usually based on drug therapies alone.
For patients diagnosed with stage IV lung cancer, understanding the molecular profile of the cancer is extremely important, as it can help your oncologist determine which treatment approach is most appropriate. This applies even to lung cancer in patients with a history of smoking.
Patients with non-smoking lung cancer have a much higher likelihood of having a genetic alteration in their cancer compared to patients who have smoked during their lifetime.
”For never-smoker patients with stage 4 disease I always say we have got to wait for the molecular results to come through. Unless it’s an emergency. In which case we start treatment with chemotherapy. Waiting for the molecular test results to come through will really help us work out what the right treatment for you is and there’s a very high likelihood that you will need molecular targeted therapy (TKI)."
Professor Sanjay PopatRSF Scientific Advisor
Free Resource
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