Your diagnosis

ROS1+ lung cancer

Understanding ROS1+ lung cancer


Learning you have something called ROS1+ NSCLC might leave you with a lot of questions. Here we’ll help explain a bit more about what this means and what it means for you and your cancer treatment.

NSCLC stands for 'non-small cell lung cancer'. This is the most common type of lung cancer – about 85% of all lung cancers are NSCLCs.1 If you’d like to learn more about NSCLC, click here.

What ROS1 means is a little more complicated. First of all, we need to learn about something called 'DNA'.

Your body is full of trillions of building blocks called cells, and almost every single cell contains something called DNA. DNA is like a set of instructions that tell your cells what to do. DNA can tell cells to do things like move around, grow and multiply, make important molecules that your body needs, and even to die.2

Normally the your DNA helps keep your cells multiplying and dying at a similar speed, so that they exist in a careful balance.3 But sometimes the DNA changes, and that balance is affected. For example, cells can start to grow too fast and eventually make a tumour.2

ROS1+ means that you have a change in a small part of your DNA (the small part is called a ‘gene’) that makes a protein called ROS1. Not a lot is known about what exactly ROS1 does normally. But when the ROS1 gene is changed, the cells in your lungs start to grow and multiply out of control, and eventually they build up and become tumours.3

Only about 1% to 2% of people have a change in their ROS1 gene.4 We don’t know exactly why the DNA changes in somebody with ROS1+ NSCLC, but you can learn about some risk factors for lung cancer generally further down the page.

People who have ROS1+ NSCLC

People who are diagnosed with ROS1+ NSCLC tend to be:
  • Younger than most people who are diagnosed with lung cancer5–7
    Many people with ROS1+ NSCLC are diagnosed in their 50s or 60s (most people with lung cancer are usually diagnosed around the age of 70)
  • Have never smoked, or only smoked a little, in the past5,6

Risk factors for developing ROS1+ NSCLC

Smoking and being exposed to second-hand smoke are some of the most well-known causes of lung cancer.8 But a lot of people who develop ROS1+ NSCLC have never smoked, or only smoked a little, in the past.5,6

Developing lung cancer when you have little or no smoking history can be extremely frustrating, and you might find yourself looking for answers as to why you have developed lung cancer at all.

Right now, we don’t know exactly why some people develop a change in their ROS1 gene. But we do know that there are some factors that can cause lung cancers generally to start growing. However, it’s important to note that for some people, there may be no obvious reason as to why they have developed ROS1+ NSCLC.

Exposure to inhaled or eaten/drunk substances such as:
  • Asbestos9
  • Arsenic9
  • Non-tobacco smoke (e.g. burning buildings and wildfires, which may contain traces of metals and other substances that can cause cancer)9
  • Diesel exhaust9
  • Metals such as chromium, beryllium, and nickel (you might be exposed to these if you work with car engines, or around smelting or welding, for example)9
  • Pollution in the atmosphere around us10
Radiation exposure from:
  • X-rays, CT scans11
  • Radiotherapy to the chest area12
  • Radon exposure13
  • Radioactive fallout14
Family history
  • Inheritance isn’t guaranteed, but some people with a family history of lung cancer are more likely to develop it than people with no family history15
HIV infection
  • People who have HIV are up to three times more likely to develop lung cancer than those who don’t have it16,17

How will my doctor know if I have a change in my ROS1 gene?

For your doctor to build a treatment plan with you, it’s important that they know as much about your cancer as possible. So your doctor will make sure that you have various tests and scans.

To test for the ROS1 gene, you will probably need a biopsy. You can learn more about biopsies here.

If you’d like to learn more about how changes to your genes can cause cancer, click here.

Does having a change in my ROS1 gene affect my prognosis?

Once you have learned that you have ROS1 NSCLC, you might start to wonder about how that affects your prognosis. But cancer is a very complicated disease, and many factors can play a part in how it starts and keeps growing. Because of this, it’s hard for a doctor to give anybody an exact amount of time. Factors that can affect your prognosis include:

  • Your age  
  • Your sex 
  • Your race/ethnicity  
  • Where you live and work  
  • The type of work you do  
  • Your diet  
  • Your weight  
  • If you’ve ever smoked/how much alcohol you drink 
  • Your family history of illnesses  

It’s worth knowing that ROS1+ NSCLC is considered a fairly aggressive cancer compared with other forms of NSCLC – four out of 10 people are diagnosed after the cancer has already spread to their brain.18 With regular chemotherapy, about half of people with ROS1+ NSCLC pass away around 2 years after their diagnosis.19

However, recent research has led to the discovery of treatments called ‘ROS1 inhibitors’, which are specifically designed to treat ROS1+ NSCLC.20

Clinical trials have shown that ROS1 inhibitors can help increase the time that somebody can live with ROS1+ NSCLC. Recent trials have shown that the tumours of most people with ROS1 NSCLC get smaller with a ROS1+ inhibitor treatment. And half of people are still alive and living with their cancer up to 4 years after diagnosis.20

Click on one of the options below to learn more 

Deoxyribonucleic acid
Non-small cell lung cancer
C-ros oncogene 1

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  2. Cancer Research UK. Genes, DNA and cancer. 2020. Available at: Accessed October 2021.
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  4. Sehgal K et al. Transl Cancer Res 2018; 7(Suppl 7): S779–S786.
  5. Park S et al. J Thorac Oncol 2018; 13(9): 1373–1382.
  6. Scheffler M et al. Oncotarget 2015; 6(12): 10577–10585.
  7. SEER cancer stat fact sheets: Lung and bronchus cancer. Available at: Accessed October 2021.
  8. National Comprehensive Cancer Network (NCCN). NCCN clinical practice guideline in oncology: non-small cell lung cancer, Version v1 2022.
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  10. World Health Organization (WHO). Ambient (outdoor) air quality and health. 2018. Available at: Accessed October 2021.
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  13. American Cancer Society. Radon and cancer. 2015. Available at: Accessed October 2021.
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  16. Shiels MS et al. J Acquir Immune Defic Syndr 2009; 52(5): 611–622.
  17. Winstone TA et al. Chest 2013; 143(2): 305–314.
  18. Patil T et al. J Thorac Oncol 2018; 13(11): 1717–1726.
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  20. D’Angelo A et al. Cancers (Basel) 2020; 12(11): 3293.