Always Ask About Biomarker Testing
I started a group on Facebook for patients, by patients. We only allow lung cancer patients in this group, no caregivers or family are allowed. Our moderators and admins are even lung cancer patients. As I scrolled through the list, I came across a woman diagnosed 3 weeks ago and was about to have surgery. She had never heard of biomarker testing.
Before learning about biomarker testing
This is always concerning to me because I know a lot of hospitals don't totally explain the importance of complete biomarker testing. Surgeons like to cut. Radiologists like to radiate. So, when it comes to your health procedures, you must be your own advocate. In addition, you need a community that can rally around you and support you. This community can answer questions in which doctors have failed to explain.
I was totally oblivious to this upon diagnosis in 2012. My thought, "cancer, you treat it with traditional chemo or surgically remove it". I completely missed all of what my oncologist telling me because I was so obsessed at hearing that I had stage 4 lung cancer. He wanted to begin with an aggressive chemo regimen. I wanted to attack as aggressively as possible since I knew surgery was out of the question.
Getting a second opinion
Therefore, I went for a second opinion. Luckily, my oncologist had ordered these tests but I didn't hear him say that he had done so. This is why I secretly record our conversations now. I forget to listen to my oncologist in full because I end up focusing on one thing he says.
By the time I had my second opinion in Jacksonville, the results of my biomarker testing had come back and I tested positive for the EGFR mutation. I had no idea what this meant, but the oncologist went on to explain that I was eligible for a targeted therapy pill. She went on to explain this was my most aggressive and best form of action. I remember thinking, "a pill a day is the most aggressive form of treatment?"
Adjusting my treatment plan because of biomarker testing
Since I received two different treatment plans, I decided to go big or go home. I went big and made the trip to MD Anderson in Houston, TX. According to my scans from Atlanta, I only had nodules in my right lung. Therefore, they were preparing to remove that lung. After I had another CT scan there, I was called in to see the oncologist on her day off and all of my remaining tests were canceled.
She explained that the scan had shown numerous nodules throughout both lungs. And since I was EGFR positive, I should go on that pill. I saw the outlook on Google (totally old by the way, don't do it). Sadly I accepted the pills as my form of treatment and left Houston that same day.
Once arriving home, I kept up my daily pill regimen. It included so many side effects but I kept thanking God I was alive. I was getting PET scans every 3 months at this point. Surprisingly, my oncologist gleefully told me during each result that the nodules were disappearing.
Living with stable lung cancer
I had a slight progression in September 2013, but we killed that with radiation. On Friday, December 13, 2013, merely one year after being diagnosed, I was told that none of my cancer was active. I did have two tumors, but one was radiated and the other displayed no metabolic activity. My dad exclaimed it was the best Christmas present ever and to this day has his Christmas tree up from that year.
PET scans turned to CT scans and now I'm going every 5-6 months for check-ups. My mom always said, "honey, they make a pill for everything". I always laughed at this, but it became true in my case.
Be your own advocate
I was able to keep my lung, in case it comes back in the other. I'm alive and grateful for every minute of it. Had I gone with the initial treatment plan I'm not sure I would be here to write this. My point is, you must be your own advocate. Seek that second and sometimes third opinion. Don't give up. When a doctor tells you there is nothing more they can do, find another one. And most importantly, make sure you have biomarker testing. It can literally save your life.
Are you raising children during your lung cancer journey?