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What cancer were you diagnosed with? Stage IV ROS1+ Adenocarcinoma (Lung Cancer)

At what age were you diagnosed? 30

What has helped you to thrive? Family and friends; doctors that care about me; the ROS1+ Facebook group; and having something to work toward. I was diagnosed the week after I began my graduate studies. The obvious thing to do would have been to drop out, but instead I went on a short break to focus on treatment, and now I am back at it! One of my doctors told me that I needed to figure out how to “get on with life” and that was, frankly, the most important advice I have received since my diagnosis.

Marisa's Story

I moved to London to start a Master’s degree in Legal and Political Theory at University College London. I worked my tail off to get into this program, which only admits twenty-five people annually from around the globe. I uprooted my otherwise stable and fun life working on Capitol Hill in Washington, D.C. to pursue a more focused discipline, and to finally live near my big sister (Jess) and her family.

I was experiencing difficulty breathing and feeling generally unwell, so I checked myself into Accident and Emergency (the UK equivalent of the Emergency Room) at St. Thomas Hospital. I suspected I had acquired a malicious virus on the flight to London or developed asthma, but it was immediately apparent that I was up against something far more sinister. Upon admittance, three different doctors performed a very detailed physical exam, which led them to believe I had tumours in my breasts. They scheduled a visit to the Breast Clinic at Guy’s Hospital the following week to rule this out. This was immediately discounted - which proved to be the only good news that week. A chest x-ray was then performed, which showed a collapsed left lung, lined with 2-3 litres of fluid, the histology of which was unknown. Dr. P, the Pulmonologist, stuck a giant needle in my lung and removed a litre of fluid to check for malignancy.

The next morning, at 7am, I received an urgent call from Dr. P stating they had unexpectedly discovered a pulmonary embolism (deep vein thrombosis) in my left lung. I was to report immediately to the hospital for treatment. They started me on blood thinners, which I will inject into my stomach for the foreseeable future. Later that day, a doctor I have never met pulled back the curtain around my bed and asked whether it was Ok to speak to me in front of my parents. Before the words came out of his mouth, I knew I was about to receive the worst news of my life. “Marisa, there is a strong possibility this is cancer."

They told us that I have advanced, metastatic lung cancer, likely driven by a genetic mutation. I was told I needed to begin treatment as soon as the molecular results were in, and I should be near family and friends because it was going to be a difficult road. He explained to me that the cancer was not curable but that he was also hopeful I had a genetic mutation driving the cells. Scientists have identified four possible mutations: EGFR, ALK, ROS1 and K-RAS. While the first three can be treated, there is no approved therapy for K-RAS, the most prevalent. I was told I have the rarest of the options, a ROS1 re-arrangement of my DNA, found in 1 percent of lung cancer patients.

10,000 drug dollars later, I’m sitting here writing this summary, feeling so grateful for the magic pill that made me feel better within three days. Unfortunately, I will eventually develop a resistance to it, so this only buys me time. But, that’s all I ever wanted. What have I learned? Be kind to your family and friends, treasure the small moments, and forget the small things don’t matter.