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.
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.
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.
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:
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