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Possible NET with No Evidence of Tumor: Mediastinal Mass

Neuroendocrine Tumors (NETs) | Last Active: Nov 2, 2021 | Replies (34)
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@hopeful33250

Thanks for your update, @megansims.

I am glad to hear that your symptoms have improved with the short-acting Octreotide. You said the doctor is thinking of starting you on the long-acting med even though there is no tumor location. You did mention, however, the mass in your chest. Has this been not been determined to be a NET? Were any biopsies done on this mass that you said has doubled in size?

For you and all other NET patients, I found a website where you can download some great information about NETs free of charge. Here is the link,
https://netrf.org/for-patients/guide/?

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Replies to "Thanks for your update, @megansims. I am glad to hear that your symptoms have improved with..."
megansims | @megansims | Jan 1, 2020

@hopeful33250 Thanks for the reply! I guess the Pulmonologist at Mayo presented my case at the Lung Tumor Board and none of the surgeons wanted to biopsy or remove the mass because they do not think it is likely that it is a NET, although the Mayo Oncologist said he cannot absolutely rule it out. When we return in April/ May, we will meet with a CardioThoracic surgeon to discuss it with them and I will also be getting a Gallium PET/MRI which should hopefully tell them more about it. THanks!

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