Hello, my name is E A and I have been diagnosed with nsclc. I have been on a rollercoaster ride since Feb 6th. I was supposed to go in for surgery on my neck. I have 2 herniated discs. They saw a 3cm leasion on my routine chest and sent me for CT. Confirmed leasion in R upper lobe. Sent for PET. Sent to Pulmonoligist for results of PET. Told I had inoperable lung cancer because it was in both lungs and lymph glands in L hilar region. Was scheduled for Bronch/biopsy. Had not told ANYONE anything about the tests yet because I did not want to scare them for no reason. I am also my husband's caregiver. He is a double amputee that went 100% deaf from antibiotics. I was very worried about how he would take it. Before I went for biopsy I finally told my family what was happening. We all went together for the results of the biopsy. The Dr. came into the room and sat down looked me in the eye and said "Well you don't have lung cancer only a lung infection." We all sat there in total shock not knowing what to say. My husband, God love him, said what we all were thinking. "What did he say?" My family asked many questions and we all left there with an uncomfortable feeling. We all talked and decided I would see an oncology specialist for a second opinion. I collected all my records and discs and off we went. He reviewed my films and consulted his radiologist and they felt I should have a needle biopsy, they were not comfortable with the diagnosis either. I took the antibiotics from the other doctor for three weeks and then went for the biopsy. We all figured if it was only an infection there would not be anything to biopsy. I was devastated when the said there was NO change from the previous CT scan. They got a sample from the leasion on my R lung and when they went for the L lung it collapsed. They could not get a sample. They put in a chest tube and admitted me to the hospital for 5 days. The biopsy on the R lung came back positive for nsclc. They still did not know how to treat it because they could not stage it without a sample from the other side. I was scheduled with a surgeon for a mediasteinoscopy and a thoracotmy and possible resection of the L lung. I went in for my surgery April 11th. They said they plucked all kinds of node from the media area and did a resection of the L hilar lymph gland and did the resection of the leasion in the L upper lung. The results are in! Nothing showed in any of the nodes or gland!! However, The tumor was inconclusive. They could still not tell if it was metastatic or a second primary. They are sending it off to Mayo. They say if it is metastatic then I am stage IV and can only do chemo. If it is a second primary they want to remove the R upper lobe of my R lung. It is now a waiting game. They say it will be 1 to 2 weeks before we get an answer from Mayo. I am so frustrated and confused and overwhelmed by it all. I have not told my family this latest fiasco. I will wait for the results from Mayo. I feel like I am torturing them. I do then I don't then I do then we aren't sure then we don't know how to treat it, can't be sure. I just want a plan so I can start doing something. Is that too much to ask?
