1. < Neuroendocrine Tumors (NETs)
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Anyone have lung NETs lining your pleura?

Posted by lbowers2 @lbowers2, Jun 8 12:55pm

My brother has recently been diagnosed with NETs of the lung. They are lining the right side pleura, and one on the carinal lymph node. We are waiting results to see if typical or atypical. Anyone have this in this location and what was your treatment plan?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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kathyzee | @kathyzee | Jul 14 8:15pm
In reply to @lbowers2 "Yes it was. It showed on the CT, but was more extensive once surgeon got in...." + (show)
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Yes it was. It showed on the CT, but was more extensive once surgeon got in. He was able to remove 7 as a whole, but more were present. It was stated that the tumors in pleura were not the origin of the cancer. It metastasized there.

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I do hope he is able to find a good specialist to help him on this journey. I saw in your thread he is being treated at upmc. Was he diagnosed in Pittsburgh? I am in Pittsburgh. I have sought treatment at UPenn in Philadelphia and also have a local oncologist. I was told it is extremely rare for this disease to metastasize to the pleura. I am happy to share anything I have learned along the way with you to help him navigate this disease.

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lbowers2 | @lbowers2 | Jul 24 4:52am
In reply to @kathyzee "I do hope he is able to find a good specialist to help him on this..." + (show)
Profile picture for kathyzee @kathyzee

I do hope he is able to find a good specialist to help him on this journey. I saw in your thread he is being treated at upmc. Was he diagnosed in Pittsburgh? I am in Pittsburgh. I have sought treatment at UPenn in Philadelphia and also have a local oncologist. I was told it is extremely rare for this disease to metastasize to the pleura. I am happy to share anything I have learned along the way with you to help him navigate this disease.

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Thank you. He was initially diagnosed in Wheeling WV. We opted for a second opinion. He had his first Gamma scan this week and will receive his results today. We have never been told the origin of the cancer. His lab work came back yesterday. After researching, it is indicative of tumor in pancreas. We will find out more today. Thank you for sharing.

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