Our mission is to improve the outlook for ROS1-positive cancer patients through advocacy, information, and community.
Our advocacy promotes critical conversations and actions to ensure our endeavours have a beneficial impact on patients. We seek to educate, inform and partner with the relevant parties to help drive the necessary changes to achieve the outcome of our mission. The patient’s perspective and experience are paramount in all of our endeavours, whether through participation in clinical trials, influencing the accessibility of subsequent medication treatments, or promoting awareness.
A cancer diagnosis can be both perplexing and overwhelming. You may experience a state of disbelief upon receiving your initial diagnosis. You may find it difficult to focus on the information that your doctor is providing. This is normal.
You may have lots of questions. It is crucial that you understand the implications of a cancer diagnosis for yourself, even if you are uncertain about the questions to ask. We aim to help. This website provides some basic information and provides links to other useful sources of information and reliable information regarding the type of cancer you have.
Our goal is to provide people with the knowledge necessary to comprehend the complex aspects of ROS1 cancer, so they can fight the illness more effectively and make decisions that could improve their quality of life.
We seek to build a community that offers support, and a sense of belonging. We provide a platform where patients and carers can interact with their peers and get support and exchange information, because we are not alone in our challenges.
ROS1 cancer, also known as ROS1 positive cancer, is a type of cancer that occurs when the ROS1 gene fuses with another gene, causing uncontrolled cell growth. ROS1 gene is inactive as an adult, but active in the womb. The regeneration of cells is occurring all the time inside our bodies. For reasons we don’t understand, the genetic abnormality which appears as a ROS1 fusion, means that the ROS1 gene is turned on to grow, divide and replicate. As a foetus its under control and will stop. But in ROS1 fusions, they keep on replicating and these develop as tumours.
There are ROS1 duplications and amplifications but the only one that matters in this case is the ROS1+ fusion which causes ROS1 positive cancer.
To determine if you have ROS1 positive cancer, analysis of the cancer cells needs to be performed. This can be done through obtaining tumour tissue samples, also called the Next Generation Sequencing (NGS) and/or performing blood tests (‘liquid biopsies’). Talk to your doctor to make sure one of these tests was performed. Your doctor may perform several of these tests at the same time to help confirm results.
Everyone! As of now, there is no known cause for developing ROS1 positive cancer. Generally seen in adenocarcinoma non-small cell lung cancer, the ROS1 gene is found in around 1-2% of non-small cell lung cancer (NSCLC) patients.
It’s vital to not look back, and instead the focus should be on living well and getting the cancer under control. Biologically it’s not associated with tobacco usage. ROS1-positive patients are often non-smokers and are younger than the typical lung cancer patient. When found in previous smokers, its likely occurred before their smoking cancer has developed, due to the early age that ROS1 is usually found at.
One cell to a perceivable lump on a CT takes about a year. Please note that the founder event of first cell with the genetic abnormality, which is then only typically discovered after cancer metastasises and is picked up in the healthcare system, is probably 5-10 years prior.
While its unknown what the actual causes are, there are some breadcrumbs like:
These are all scientific hypotheses though, rather than causative factors – and as forementioned it’s not a productive use of time to try and play the blame game.
The most common of ROS1 positive Cancer is non-small cell lung cancer (NSCLC). The others primary cancers associated with ROS1 are listed below:
There is evidence that attending a support group can help people with cancer. Having relatives and friends helps tremendously, yet they cannot really empathize to what you are going through. Once you have a cancer diagnosis and start talking about it in a group of people who have similar feelings or can understand where you are coming from, your emotions, darkest fears, frustrations, happiness, and everything else will be seen from a different perspective.
