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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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@megansims

Thanks @hopeful33250 ! The PET was negative, I did a 5-day trial of short acting Octreotide and felt amazingly better with no symptoms, so the doctor is pondering starting me on the long-acting even without tumor location. They repeated the genetic test on the Octreotide, just to see what it shows. The mass in my chest is double in size than it was several years ago, so they are talking with thoracic surgery to see what to do about it. It sits in the subcarinal space nestled between my aorta and my pulmonary artery- ick.

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Replies to "Thanks @hopeful33250 ! The PET was negative, I did a 5-day trial of short acting Octreotide..."
Teresa, Volunteer Mentor | @hopeful33250 | Nov 21, 2019

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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