Not sure if I'm doing this correctly. I'm trying to reply to Donna's reply to me.
First of all, I am so encouraged to see that you are still here, having begun your 'journey' back in '98!!
Unfortunately, my PET scan results were not good: there are two maligant foci that are 13 mm. in diameter, in two mediastinal lymph nodes. (That is my understanding of the report and what I have been told.) I am Canadian and have been supplementing our government 'system' with a bit of private medicine as well. (A company I accessed online + the oncologist I was referred to.) So, while our system had not done testing of my tumor for mutations, I had it done at Johns Hopkins (Foundation One) and know that I have the EGFR mutation. As our BC Cancer Agency has a targeted therapy for people with the EGFR mutation, I may be able to get the pills from them. I guess the bright side is that there is the possibility of such a targeted therapy for me. I was told, however, (after I had cardiac complications in the hospital) that I would NOT be a candiidate for chemo or radiation because of my severe reaction to Amiodorone (?)
Anyway, I'm wondering what experience other forum members might have with the targeted therapy for the EGFR mutation.
I am upset because I had been told I was stage 1A and the ctDNA blood test had been recently negative, and then these two sugar happy nodes turn up on PET scan.
True, at just over 3 months post lobectomy (via minimally invastive method) I am doing very well, feeling stronger every day, and I will just have to take each day as it comes and do what I can to be healthy?!