ginnyva

Yes, I feel like I am on your journey with you. I will pray for you and hope to see updates of successful treatment.

Thank you for your post. I had no idea the funding for research regarding lung cancer in the U.S. compared so unfavorably. Yes, let us all speak out!

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?!

I was diagnosed with non small cell lung cancer in December of 2014 by a fine needle aspiration biopsy, and had a left upper lobectomy via a MITS (minimally invasive thoracic surgery) on February 12, 2015. I am 67 years old, retired for 9 years, leading an active life, and had always thought of myself as a very healthy person! Thankfully there was no cancer found in any of the lymph nodes removed. I live in Canada but paid for molecular tests on my tumor sample that were done at Johns Hopkins in the US. (The Foundation One test.) I have the EGFR mutation, as well as another one (no treatments available yet for the second mutation) but am not having any targeted chemotherapy with EGFR inhibitors at this time. I have been told that my chances for a cure are 50%. Initially I had lots of complications while recovering from my surgery: the worst of these was severe tricuspid regurgitation, which seems to be improving thankfully. I had a CT/PET scan done last Friday (May 15) and do not know the results of this yet. I choose to think my odds are better than the 50% but get scared when I read of others' accounts. I am hoping that this website will be helpful in educating myself, providing support to others if I can, and of course getting support from others if needed. There will be a learning curve in just using and navigating this website as I haven't really used anything like this before.