jamfam

I'm a 65 year old grandfather of one, father of four grown children, married for 43 years this past week. I was diagnosed with sarcoidosis 30 years ago, lung cancer just over four years ago. Following a right pneumonectomy, I was NED for two years. A cloudy mass was noticed in late 2011, and it grew slightly for a while. It is now more aggressively trying to take over the LUL. I am currently refusing any invasive testing, considering the risks greater than the possible benefits. My treatment options are limited-stereotactic radiation comes and goes as my only "curative" option. I just started a second opinion process at the Cleveland Clinic-my primary center is the James Cancer Center at Ohio State. I attended Lungevity's HOPE Summit in early May-a great experience and one I recommend to all survivors. I look forward to participating in this message board.

I spent the morning today on the first steps of obtaining a second opinion at the Cleveland Clinic. I've been more frustrated than I want to admit with my current medical team, which has been unable to identify the new LUL mass after two years of watching, two invasive biopsies and lots of talk. The new recommendation-from my current team-was for an open biopsy, just a little risky when I only have two lobes left. The second opinion-not complete until next Tuesday when the tumor board meets-will probably recommend a PET scan/brain MRI. The new mass is "highly suspicious" for malignancy, so the one option appears to be stereotactic radiation (unless metastatic). That is, if determined that radiation will not suppress my breathing too much, whatever that means. Just very frustrated at the moment--was NED for two years following chemo and pneumonectomy--reflecting on how tough these journeys of ours can be. I know that many of us have faced and will face these "between a rock and hard place" decisions, so please pray for us and send good thoughts our way. Regards, Allan