I will be getting a Gallium 68 PET MRI in the Spring, along with repeat labs, basic labs as well as some NET biomarkers.
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Wed, Jan 1 5:57pm · Possible NET with No Evidence of Tumor: Mediastinal Mass in Neuroendocrine Tumors (NETs)
@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!
@colleenyoung – I did get the test done, two of them actually. The first was 60% and the second result was 67% which the lab listed as indicative of slow growing NET disease, but the Medical Director and the Mayo Oncologist also stated it was not diagnositc on its own, so then, what was the point? More anxiety, less answers!
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.
Have many of you had the WREN lab NETest? I just had it done and the results were 67%. They still have not found a tumor but I am scheduled for an FDG-PET on Thursday.
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.
Thanks so much! It was a really great experience and I loved meeting Dr. THor- he was outstanding, but I only wish he was not perplexed by me! We had a really nice stay at an Air b'n'b in Chatfield. It was a great place for the kids to run around! We really enjoyed Rochester and thought it was a great town! We live about 4 1/2 hours away and have three little ones, so it is quite an adventure to come down, but it was all very coordinated and seemed pretty easy considering all the testing that we had done. Thanks so much!