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New Diagnosis: husband's labs are all indicating NET
Neuroendocrine Tumors (NETs) | Last Active: 14 hours ago | Replies (36)Comment receiving replies
Hi and thank you for sharing your story . I was wondering about the size, grade and stage of the NET in small intestine that was found in your husband in 2019. Also your post helped ease my mind, thank you for that
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When he started out it was a T4N1 stage. I don't know exactly when they gave it that "label". Not sure if it was before or after he had his PET scan. Btw, a Dotatate PET scan is recommended for NETS. They pick up the NETS better than a regular PET and smaller ones as well. So when he was initially diagnosed it was under emergency circumstances with having a blocked intestine. The surgeon found the tumors outside the intestine and in a few of the lymph nodes and then 2 months later they did a PET scan. That's when they found it had metastastisized to his liver and several
more lymph nodes. I'm not sure how big the tumors were but I can tell you they were big enough to where they grew and spread enough for him to have surgery on his liver. They "debulk" the liver which means they removed as many tumors as they can with the knowledge that this probably won't be the last "debulking". In my hubs case instead of removing the right lobe like the surgeon suggested he also gave the option of being more conservative and making wedges and taking out the tumors with the least amount of liver possible. However, personally I'm not sure that was the best route bc the pathology report came back with 9 of the 11 specimens still being positive for disease instead of having clear margins. They also had to take the gall bladder and also removed
tumors from the other lobe as well. He also had to go through IV radiation for 6 months after that which was not without some side effects and inconveniences. He is at 14 months out of the IV radiation now and 2024 to present his Dr has been having him do MRI and CT's alternating every 3 months. With October still being his PET scan month. This Thurs he goes back for a follow up with his surgeon. I get the feeling they are watching something closely. I do read the scans and can see growth. But to what degree from their perspective? Not sure. They see this daily while us worry warts sit back wondering when the other shoe will drop. Not sure this helps. I can look at his scans and get more of a definitive size if you'd like. From my side. ...I have to support his decisions even when I'm not sure that's the route to go. We talk about it and he makes the final call. That and pray... that's my job.
May I ask how big your tumor or tumors are and what the Dr wants to do??