I was diagnosed with non-small cell lung cancer (NSCLC) on April 6, 2018. I had actually started feeling bad in January of 2018, on my birthday to be exact. I woke up on Saturday morning, January 27, 2018, and felt very congested in my head and throat. It got worse as the day got longer and by the end of the day, I had laryngitis. The next morning, I went to a local urgent care and was told I had an upper respiratory infection and once it was gone, my voice should return within two weeks. Fast forward to almost two weeks and I still had laryngitis and was at work on my lunch break. I had finished my lunch and was cleaning up about to head back to my desk when I felt like something was in my throat, and I coughed in my hand and felt something. It was blood. I rushed to my supervisor and told her I needed to go back to the doctor ASAP and called my husband and he met me at the doctor's office. So, I went back and again was giving another round of antibiotics and told I still had infection but was also given a referral to an ENT.
Sometime in March I went to my local ENT doctor and told him what all had been going on and he proceeded to do a scope of my sinuses and throat and discovered I had a left paralyzed vocal cord. He said not to be alarmed - it could just be from infection but wanted to also order a CT scan of my neck and chest because I had been a prior smoker and to rule out anything else. I'm forever grateful he ordered that scan. It was still another almost two weeks or so before I had the CT scan done. I eventually had it done maybe around March 26, 2018, and was called immediately. I had a 2 cm lung nodule at the top of my left lung. I was going to be referred to a local pulmonologist but asked for a referral to a research and teaching hospital. My dad was already a patient at one and treatment was so much better than what I had witnessed when my mother had been diagnosed with lung cancer and treated locally. It just wasn't good, and I wanted to go somewhere else. I had just turned 40 and my youngest child was 12 and my oldest was 17 and a senior in high school.
I got the referral to an NCI-designated comprehensive cancer center, and everything started happening fast. I went there around April 2, 2018, and when I walked in, I had a pulmonary function test, a PET scan, labs, and saw a thoracic oncology surgeon. She told me she felt it was cancer, however, she needed to do a bronchoscopy and would like to also do a mediastinoscopy. I had those done on April 6, 2018, and was told I had NSCLC. It took several weeks for genetic testing to come back and in the meantime, I had a brain MRI and found out I had seven tumors on my brain and had stereotactic radiation to my brain around the end of April of 2018. My genetic testing came back in May, and I was told I was KRAS G12C along with TP53, my PD-L1 was 100%, and my tumor mutation burden was 14. My medical oncologist gave me three options and went through them all, and I chose the clinical trial since I knew I would be checked thoroughly. I was on the trial for two years and completed it in May of 2020. So far, I have been stable since March 18, 2019. I’m praying I stay that way for a long time. I will go back soon for my scans and brain MRI.
The one thing I have always pointed out to others when telling my story is that sometimes you really need to go to a research or teaching hospital because in my opinion, you really need an oncologist that specializes in lung and thoracic cancer. I just think they’re more up to date on the newer treatments and they’re going to be the ones over clinical trials, and I really believe in clinical trials because you get exceptionally great treatment during a clinical trial.
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