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

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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?

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Replies to "Hi GAP, Last May 2022 I had a lung NET removed with the right upper lobe..."

Hello, sorry to hear you are having such difficulty. I do not know who is rendering care to you at this time, but I hope a NET specialist, not just a general oncologist, is on your team. You can find them easy enough at large medical centers, NY, Texas, Tennessee and even in Florida.
Sounds like a second opinion is in order.
You should become familiar with all treatments available i.e PRRT. Surgery is the first order of cure with NETS. so thats good.
Ron Allens NET website is a great sources of world class treatments. He will communicate with you on line too. Hope this helps. Best Wishes GAP