jack14

Thanks Tom. The thoracic surgeon was going to remove the lung nodule by VATS, but the lymph node turning up malignant and as a met ended that. One thing I have learned though, that might be of value in dealing with the VA Mission Act, is that the Community Care department normally takes thirty days to process a request to see an outside provider unless it is expressly requested to be expedited by ones PCP or VA specialist. Of course the provider must be on their approved list or willing to be added to it.
I also learned that one must never give the outside provider their private insurance or Medicare because if they file that, then all sorts of problems will show up. Follow the instructions in the VA authorization to the letter. And our copy of that authorization is not the same as the one that  they give the provider. Our copy lacks the information needed to file for reimbursement.
I will indeed pass this site on to those in need as I meet them. Thanks again, and I am planning on staying the course.
 

Thank's Tom. I am more than willing to share my experiences with you great folks. Thank you for the opportunity, and thank you for being here to help. I was diagnosed with SCLC after an axial lymph node was removed and biopsied. There was some question as to it's origin, but after sending it to Johns Hopkins in Baltimore for additional examination and a second opinion, it came back as being a probable met from an 8mm lung nodule. A PET scan limited the cancer to some lymph nodes on the left side of my arm pit and the nodule on the right lung apex. Apparently it traveled across my chest  to the other side, which they say is rare but happens. One of the Pathologists commented that they saw a cell actually  "crawl" across a nerve in the specimen  during the biopsy slide preparations! I had no idea that could happen, as I thought our cells travelled about the body by way of lymph fluid or blood. But, now,  in retrospect, our cells do have to have the mobility to do their jobs, and must be able to crawl about tissue and interstitial spaces, etc. So, other than grossing me out after I first heard that, I feel a bit better about that part anyway. lol
Since the scan didn't reveal any thing else from the base of the skull to mid thigh, an MRI of the brain was done, with and without contrast. The brain, fortunately, is clear. After that, a PDL-1 revealed a 20% score for immunotherapy. The VA Oncologist I consulted with sugested I ask my civilan Oncologist to have a Foundation 1 Panel of Genes run to determine if there were any targets for therapy. The VA Oncologist got me approved to go outside the VA for treatment and my local Oncologist ordered the panel. We are waiting for the results before starting treatment. Monday will be two weeks since it was sent off. At this time, my Oncologist is not going to administer any chemo.  I am looking at Keytruda every three weeks and maybe a target drug or two depending on the panel results. At least that's my understanding.