← Return to Neuroendocrine Lung stage 4B with metastasis in liver

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@gapsc

Greetings….I am still standing and living a normal life at 85 with my disease in the lung and metastases to bone. All currently stable. Monthly infusion of Lanreotide is still ongoing.

Low dose radiation to lung tumors about a year ago is still having a beneficial effect on Atypical lung lesions.

There are now many experts on NETS throughout USA, Mt.Sinai,NY and SK are centers of excellence.
Look at Ronnie Allens website and newsletters for excellent info on new treatments and trials.
https://ronnyallan.net/2023/01/22/neuroendocrine-tumors-are-uncommon-but-definitely-not-rare/
Good Luck and keep smiling GAP

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Replies to "Greetings....I am still standing and living a normal life at 85 with my disease in the..."

Hi GAP,

Last May 2022 I had a lung NET removed with the right upper lobe of lung and lymphnodes. I was healing well for 3 months. In August 2022 I was in extreme thoracic pain and the PET CU dototate scan showed my spine had SUV uptake and a lesion 4th and 5th vertebrae. Since then I have had fractured ribs 5th and 7th and right upper abdonimal pain, swollen hot tender right upper abdonimal with nausea. They say the right upper abdonimal is a liver hemangioma with a small cyst and they do not want to do anything about it.
Janaury 2023 I had another PET CU dotonate scan and the spine SUV uptake is still highlighted and I am still in back, rib and upper right abdonimal pain. Should they be referring me to another doctor instead of an oconologist since they say not to worry about the SUV uptake activity and lesion in the vertebrae and are confident it is a hemangioma and cyst in the liver? I really wouldn’t care, but something is not right, I should not be in pain. The oncologist don’t seem to be concerned about the lesion in the vetebrae (even though it had SUV uptake) and liver being neuroendocrine cancer because they tell me lung NETS don’t spread (my pathology report notes angiolymphvascular invasion) and I don’t think it is right they leave me hanging especially since I went back to them in August because of the thoracic and spine pain and then they found the lesion in the vertebrae. In September 2022 I had to go into the doctors because my right upper abdonimal was hot swollen and on fire and I was nausea and they think it is a liver hemangioma and say to just live with it. Is there a team that can help me?