What are All of the Acronyms? Biomarker Testing and Mutations
I remember my first oncology visit and remember the utter overwhelm that came upon me. This was a two-hour visit that seemed like 5 minutes. I found myself asking the same questions over and over. I remember the confusion. I remember the terminology that was spoken that day being somewhat like a foreign language. I remember hearing those awful words of “I can’t cure you, but I can treat you.” And this is where the confusion began. I now look back and am grateful that I can be treated.
Inconclusive testing and no answers
Prior to this visit, my pathology was sent to Mayo Clinic in Arizona from Baptist Memorial Hospital in Jackson, MS. It was sent simply because my thoracic surgeon, who removed three sections, and his entire team couldn’t put a finger on what these “ground glass” looking things were in my lungs.
The bronchoscope was inconclusive. The needle biopsy through my back was inconclusive. The final option was my pulmonary specialist punting me to a thoracic surgeon to collapse my lung and take out three sections for review. I was told over the process of two months that this was NOT cancer, but they were not sure what it was. A possible fungus was mentioned and they scratched their heads the rest of the way.
The great sucker punch
Upon receiving the report from Mayo, they noted that only four cases had been documented similar to mine at Mayo Clinic. My exact diagnosis was miliary adenocarcinoma. The thoracic surgeon called me into his office to just “check my incisions” because he was going out of town, but that the pathology was not back yet.
I went to the office alone that day thinking it would be quick and I would return to work and keep going on about my day. News flash!! The path was back. I was told it was cancer that very day. And if you are here, you know what that feels like. It was the great sucker punch of my life.
My initial oncology visit
So back to that day of my first oncologist visit. He took my path report and wrote down all of these letters and names of drugs. I was dumbfounded and clueless. He explained to me that he had requested further testing to check for any specific mutations. At this point, I knew stage IV lung cancer and “Dr. Google” isn’t very nice when you type in those words (shame on me -- don’t ever do it). Google didn’t give much hope let’s just say and that was my extent of knowledge over lung cancer.
What did all of these letters mean for me?
My angel of an oncologist began to speak to me about EGFR, ALK, ROS1, T790 and so on. He explained that if any of these were specific in my testing and if my tissue had any of these expressions, then I would be eligible for possibly oral chemo and/or immunotherapy. I was told about the differences between TKI and immunotherapy. He wrote each of the drugs out and matched them with each possible expression so that I could research if I so chose to.
I will admit that when I heard that it was possible that I could take oral chemo, I dried my tears and adjusted my sail and saw a ray of hope. Then the discussion of resistance occurred and the median averages of some of the oral drugs and my hope left just that quick. I was handed the tissue box back. We could only discuss hypothetical situations as we didn’t have any definite information yet other than lung cancer and over 100 nodules are in both lungs. Because of the innumerable amount, it was said I was inoperable, which hurt my feelings also. I was at the mercy and hope of the additional testing and modern medicine.
The roller coaster of emotions
The visit was up and down. I was overwhelmed yet I went in strong as an ox and refused to cry in front of this doctor that sees thousands. I thought to myself that he isn’t moved by my story. I am another number on a folder.
However, I learned quickly that this just wasn’t the case. He was an angel and has been since. He gave me the facts. He gave me knowledge of my disease. He gave me hope. He also gave me a sense of devastation that comes with those facts. The roller coaster of emotions in that one office visit that day is overwhelming. I am thankful for my doctor taking that extra step to make that determination because I was absolutely clueless about targeted therapies and mutation-specific treatments.
Winning the lottery
Finally, after two weeks, my cell phone rang while I was at work. I raced outside to take the call. It was my doctor himself. He informed me that I had the T790 expression, which meant that I would be on Tagrisso, and he was submitting the script that day and informed me of what to do next.
I was ecstatic if one can be ecstatic over cancer treatment. I had just won the lung cancer lottery. I had the exact mutation that a brand new cutting edge drug just approved literally weeks before by the FDA as a first line therapy. I was so very thankful that my doctor requested that additional testing and also for incredible research that resulted in an amazing drug that has kept me stable for two years.
I often feel guilty for having such an incredible run on this journey thus far, but I am grateful every day to be here.
Do you find that staying zen through your lung cancer diagnosis has helped you in your journey?