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What tests should be part of a surveillance protocol for lung NETs?
Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (38)Comment receiving replies
@amyschwietz
My DOTATATE scan was negative because they determined I don’t have somatostatin receptors needed for that scan. The octreotide still works to treat my lung NETs and DIPNECH though. It has slowed tumor growth and managed my respiratory symptoms. I am monitored with CT scans with contrast. I did have a regular PET scan recently. Things are going well.
Replies to "@amyschwietz My DOTATATE scan was negative because they determined I don’t have somatostatin receptors needed for..."
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@californiazebra
I too had a negative Dotatate with little to no uptake and was told I should have never been put on Lanreotide dose 120(4 months) because it wouldn’t work for me. 50%(?) hair loss extreme pain in hip/pelvis and more cancer growth and spread 😢. My original site is lung to liver spine skull and bone.