← Return to Possible NET with No Evidence of Tumor: Mediastinal Mass

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@hopeful33250

Hello @megansims, it is so good to hear from you and know that you had a good experience at Mayo. I'm glad that your travel arrangments and lodging worked so well for you and your family.

Did Dr. Thor run any additional tests that you had not had done previously? When do you expect to get the results?

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Replies to "Hello @megansims, it is so good to hear from you and know that you had a..."

Teresa, Thanks! He ordered a couple of repeat CT scans, had many of my previous images re-read, ordered an FDG-PET scan, and a genetic NETest from WREN laboratories. He is waiting to see the results of the WREN test. He also mentioned that many lung NETs do not show up on the traditional Gallium scan so that is why he added the FDG PET scan. He is also having me do a home 'provocation' test for Carcinoid Syndrome (do not try this at home disclaimer!). He wants me to provoke the flushing with a glass of red wine, start Octreotide 3 times a day, then after 3-4 days, drink another glass to see if I have the flushing or not! He said it was the only time that he ever prescribed a glass of wine for a patient! He is puzzled by the labs- some of the Chromogranin levels have been high (3 of them) and 1 has been normal, and the same with the 5-HIAA (3 of the urine have been high, 1 normal, and 1 high Plasma, and 1 normal). He feels like the tumor should be visible, but he also felt that the symptoms are very suggestive of the syndrome.

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