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Need prayers and positive thoughts


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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

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Allan - I am sorry you have reason to be here, but am glad you found us.

I can only imagine how frustrating it must be to have the diagnosis become so complicated and take so much time. It sounds as though they have not yet done a PET scan, which I find a little surprising. It surely would make sense to do a PET before doing an invasive biopsy. Radiation can do damage to the lung, although I know they have some new procedures and equipment that can minimize the damage to surrounding tissue. I had to have radiation on my one remaining lung, and they did a pulmonary function test just like they did prior to surgery, to try to make sure I could manage with additional loss of function. As you already know, this is the most nerve wracking time, this waiting for a diagnosis and treatment plans. I will be keeping you and your family in my thoughts and prayers.

Others will be along soon to welcome you also. Please keep us posted as to how you are doing. Even if you just need a place to vent, this is a good place to come as we have all been there and understand.


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